Interview between Speaker 1 (Meg) and Speaker 2 (Reyma McCoy Hyten)
Episode 70: Who Has A Seat At The Table? Thinking Beyond Representation And Advocacy
[Introductory note]
Hey — it’s Meg. If you’re like me, listening to these interviews inspires a lot of change in your work as a professional supporting Autistic people. When I first created my flagship course, The Learn Play Thrive Approach to Autism a few years ago, I knew about strengths-based supports for Autistic people, but I hadn’t even heard of the double empathy problem. And I didn’t yet have a critique of things like teaching neurotypical social skills to Autistic people. Like so many of you, as I learn and grow, I’m excited to make updates and changes. So, to pull back the curtains for you a little bit, at Learn Play Thrive we have an ongoing process of having our content reviewed by Autistic consultants from a number of professions and updated to really reflect what we are learning. We also listen to you telling us what you want to learn and how you like to learn it. So, this month, the latest version of our on-demand course, The LPT Approach to Autism, is newly recorded and more affirming than ever. We also tightened it down to just 6 hours that are absolutely jam-packed with content to build your confidence and skill in strengths-based, neurodiversity-affirming practice. We want you to walk away from this course feeling really excited to plan your next session with an Autistic client.
At this point, it’s hard for me to look through our testimonials and choose what to share with you because we have over 2,000 of them. But here’s just one from Susie Green. Susie says: “This is by far the best course I have completed since graduating from university 11 years ago! Meg is the most amazing instructor. The practical strategies, use of video examples, and being able to take my learning and implement it into my practice as an OT immediately, has helped me to feel so inspired and more confident in how I can best support my Autistic clients to achieve their goals.” —Susie Green (Occupational Therapist)
The thing I like about this from Susie is that she is affirming that she really is able to take this content and use it in her work right away. So, this course isn’t just for OT’s, it’s registered for AOTA and ASHA CEU’s. We are applying with ASWB for social work CEU’s as well. The big news is that the new version is on pre-sale for under $300 right now — we haven’t priced it this low since it was first released. If you haven’t registered before, we want you there now. Everyone who enrolls before the end of May gets access to the new version of the course for a year on demand when it comes out May 31st for a year. Normally, we just give access to six months. So, the price will also go up when it’s released as well, so make sure to take advantage of pre-sale during the month of May. You can get the details at learnplaythrive.com/approach2023. That’s learnplaythrive.com/approach2023.
[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 70 with Reyma McCoy Hyten. Reyma McCoy Hyten, is Autistic, and was the first Black woman to ever serve as the US Department of Health and Human Services Commissioner for the Administration on Disabilities. She was an Antibigotry Convening Fellow with the Center for Antiracist Research at Boston University and her work has been featured in a TIME, The Guardian, Vice, and USA Today. After two decades as a helping professional, Reyma now focuses her work on the root cause of systemic oppression, and, as she puts it, “how systems create marginalization in the first place.” And that’s what this episode is all about.
Okay, I’ll name this up front: talking about the root causes of oppression isn’t an easy conversation. Because it’s not easy to figure out what to do about it, how to address it, how to change it. But I really want to invite you to join me in sitting through the discomfort of not knowing and listening anyway.
Before we jump in, I have two quick notes on language and phrases.
One note about a metaphor used in the interview. During our interview, Reyma uses the phrase ‘pointing at the moon’ a few times, and maybe you know this expression, but since it was new for me, I wanted to share its meaning with you. The idea is that the moon is meant to represent the capital T, ‘Truth’, and the finger pointing at the moon is a distraction from that, from someone who doesn’t have or doesn’t know or even critiques the ‘truth of the moon’ itself.
The other language note is that throughout the episode, you’ll hear Reyma uses the terms ‘autism community’ and ‘Autistic community’ meaningfully and intentionally in different ways. So, as she says during the podcast, the ‘autism community’ refers to ‘autism moms’ who are often non-Autistic family members and caregivers, and non-Autistic service providers and teachers; as opposed to the ‘Autistic community’ which is one led by Actually Autistic people. There is a critique here that you’ll hear of the Autistic community as well. It can be limiting in its own way if one person aims to represent the entire Autistic community, or is treated as if they do, which, of course, no one could or should ever do. We will get into that a little bit more in the interview.
Here’s my chat with Reyma.
Meg:
Hi, Reyma. Welcome to the podcast.
Reyma:
Hi, Meg, thanks for inviting me.
Meg:
I’m really excited to sit down and have this conversation with you. Reyma, I want to start with your story. Can you tell us about the work you’re doing now, and then walk it back for us and tell us what was your journey to get to where you are?
Reyma:
Well, since we don’t have all day, I’ll try to be as succinct as possible. So, currently, I do a lot of training and technical assistance at the intersection of disability, diversity and intersectionality. So, I do that independently; I am self-employed. And I work with organizations, agencies, individuals, and then at times I facilitate trainings just independently and whoever comes, comes. Prior to that, I was the — well, I served in a variety of different roles. I was the Executive Director of the National Council on Independent Living briefly, I was the commissioner for the Administration on Disabilities, I was one of the original appointees in the Biden Harris administration. And then, I was a service provider. And that was what I did for about 20 years in a variety of capacities from personal care attendant, all the way up to Executive Director and, of course, everything in between. And prior to that, I was a participant in services. I was diagnosed as Autistic way back in 1986, prior to becoming a ward of the state of California, and I participated in services that, I guess, to be diplomatic, found lacking. And that really kind of planted a seed in me at a very early age. And with that, see a desire to provide services better, to ensure that services are not causing further harm to people that more often than not, by the time they began participating in services, have experienced myriad levels of trauma. And, and so, you know, doing the work that I do now, kind of providing, advising, and consultations to service providers helps me to meet that need. And, you know, I continue to be open to evolving as far as how I spend my days, as far as fulfilling that desire within me.
Meg:
I’m so glad that you’re doing that work, because as we know and are increasingly learning, we have a lot of work to do to first reduce our harm, and then increase our positive impact as folks supporting Autistic people. You’ve mentioned that a lot of your work centers around intersectional inclusion. Can you give us the background on what that means, and why this is important?
Reyma:
Yeah. Yeah, I think we’ve been kind of — whether or not it’s been intentional, those of us who work in or adjacent to disability spaces, we’ve been grappling with, you know, how to do what we do in the most effective ways possible, in a variety of capacities. And so, I’m going to talk about advocacy a little bit, because theoretically, you know, advocacy informs everything that happens in disability spaces, including how services are provided. And, and so there’s been, as I think, probably anybody that’s tuned into this episode is concerned, a lot of questions with regards to, you know, who speaks for the other party? Who speaks for people with autism? Who speaks for the Autistic community? And you know, the, and the goal, theoretically, in finding an answer to that question is, you know, if we can nail down who speaks for this population of people, then, you know, the guidance that they provide is going to positively impact everything that happens in disability spaces. And so, there’s been sort of this — not to disclose the fact that I’m an 80’s/90’s kid, but the sort of like, East Coast, West Coast hip-hop battle between the autism community led by ‘autism moms’, service providers, that kind of thing, and then the Autistic community that’s theoretically led by actually Autistic people, and you know, everybody’s pointing at the moon, so to speak, and saying, you know, if you, you know, stick with us, and we’ll show you, you know, how to get to the moon in the most effective way possible.
And what I have experienced personally as a person on the spectrum, and a service provider, and an advocate, and everything is a lot of folks who perhaps intend to point at the moon but have been delivering the message that they themselves are the moon, and that has profoundly impacted our understanding of who Autistic people are in this country, on this planet, et cetera. And I would argue that it has led to a significant skewing in how research happens, you know, how, you know, advanced education and credentialing occurs, you know, because we’re not looking at the entire community of people, we’re looking at the people that the people — that the advocates are pointing at us to look at. And more often than not, that’s not the most marginalized members of the Autistic/Autism community. The folks that I’m talking about don’t care about semantics like, is it people with autism; is it Autistic people? The people I’m talking about are trying to survive, have bigger issues going on than, you know, who gets to decide whether Autistic kids get waffles or pancakes in the morning. And so, that has created an imperative for me, because I don’t hear anybody talking about the things that I’m talking about. I don’t hear it in the autism community, I don’t hear it in the Autistic community. And I think that I’ve done my due diligence to work in both spaces. You know, I’ve served on boards, you know, as far as autism organizations are concerned, I’ve served on boards as far as Autistic organizations are concerned. I personally have provided services. And, you know, we’re not hitting the groups of folks that we need to hit.
And I think, ultimately, if we’re willing to, you know, sit with ourselves and, and kind of do a SWOT analysis as far as what’s working, what’s not working, what can we do better, et cetera, et cetera, we’ve got to come to terms with the fact that, you know, is it effective to, you know, designate particular individuals and say, “These are the people that have their fingers on the pulse of people with autism, Autistic people”? Perhaps we need to consider going deeper. As we talk about things like intersectionality and, you know, over the past three years, we’ve been talking about things like systemic racism, systems of oppression, that kind of thing. What if it’s time to start talking about the fact that it’s not — what if it’s not acceptable for us to live in a society where if there aren’t people advocating for other people, those quote-unquote, ‘other people’, are not going to get their basic needs met? And so, you know, what if the issue isn’t finding the right people to do the advocacy? What if the issue is we live in a society where if advocacy isn’t happening, we’ve got significant swaths of the population that, you know, are being marginalized, and are vulnerable to all the social maladies that we all talk about? Homelessness, food insecurity, incarceration, premature death.
And what if we commit to exploring the fact that we need to start expending energy into — well, what we’ve been talking about, or at least what we were talking about back in 2020. Dismantling systems of oppression, recognizing the fact that this thing that we live and work in was not created to accommodate all of us, let alone be inclusive for all of us. And instead of trying to, you know, find the unicorn out there that can speak for all Autistic people perfectly, you know, instead work to create a society and a system where people’s needs are not — the meaning of people’s needs isn’t contingent on that perfect unicorn being located and saying the perfect words to the powers that be. And I’m not saying that I’m that person. I’m not saying that at all. What I am saying is, I appreciate any opportunity to kind of put that bug in people’s ear, so to speak.
Meg:
Okay I want to unpack this a little. As you know, at Learn Play Thrive, we value listening to Autistic voices. ‘Voices’ here is intentionally plural in the hopes of inviting listeners to recognize that being Autistic is a heterogeneous experience. So, I’m gonna ask you to sit with the discomfort of this in a both/and way: It’s BOTH true that we need to be listening to Autistic individuals and professionals, AND it is true that no ‘one perspective’ will be relevant to each of our clients, and no one person can be a one-size-fits all ‘savior’ of sorts, or even representation of the entire Autistic population.
Reyma goes out on a limb here to ask our listeners who’s not at the figurative ‘table’ on social media, in policy decisions, in our work spaces and invites us to interrogate who is at the table and why they may be considered more ‘palatable’ or more ‘convincing’. She then really pushes us to question a system that’s set up to support individuals, only if someone is advocating for them. She’s, therefore, also encouraging us to learn from and be in community with Autistic people from our students’ or client’s communities, and to be curious about our students directly — which includes avoiding assumptions about their identities, experiences, and preferences — and to look into and then advocate against policies that are inherently exclusive to many individuals and communities because of intersectional issues like race, class, gender, language, to name a few. If you’re wondering what this looks like on a day-to-day basis, I’ll put links in the show notes to reference a few episodes that may be particularly relevant to help with some of the ‘translation’ of this, episodes like my interview with AC Goldberg, Joy F Johnson, and Chelsea Wallaert.
Okay. So, going back to the interview, I asked Reyma about how hard it is to be a therapist on the ground trying to do her actual work and also trying to figure out how to challenge systems of power and oppression. Sometimes we say, “I just can’t do this. I’m drowning. All I can do is my work as a therapist and try to do it well.” And I asked her what we miss when we say that, when we say, “I can’t think about intersectionality, or power and oppression — I’ve just got to plan my sessions, do my work; this isn’t impacting me, this isn’t impacting my work with my clients.” Here’s what she said.
Reyma:
Gosh. Well, everything. I mean, everything’s being missed. You know, I think if a person comes into this work, and, you know, their proclivity is to, you know, focus on quote-unquote, ‘their patients’, you’ve got to at least acknowledge the fact that there are significant systemic barriers that are baked in, that ensure that your clients, you know, are members of very specific demographics. And, you know, what a shame for somebody to engage in all the advanced education and credentialing that your average listener engages in, you know, in the hopes of being the change, or helping other people, or whatever flowery sentiment brings a person into this arena, and then, you know, willfully place a wall up and say, “Well, I’m only going to focus on my clients.” The fact of the matter is that, you know, the vast majority of people who are on the autism spectrum in this country for a variety of reasons that are that are systemic in nature, you know, are not able to participate in services and supports that could assist them in leading, you know, thriving, interdependent, independent, whatever lives. And the fact of the matter is that, you know, as far as a professional’s client lists are concerned, you know, the vast majority of folks tuning in here, I’m assuming, are somehow attached to the Medicaid system, as far as revenue streams are concerned. These revenue streams can change at any time, and that can further impact who is on a person’s client list.
And so, you know, these issues might seem kind of tertiary, or, you know, extraneous to the significant responsibilities on a day-to-day basis for, you know, your average listener, but ultimately, it behooves anybody that has interest in providing services and supports, and I don’t want to get specific about that, because I know that there are probably people who tune into the show that provide things like ABA and that’s a whole rabbit hole that, you know, I think deserves its own, its follow up, if I were to ever participate in this podcast again. But nevertheless, what you do on a day-to-day basis, if you are receiving payment for it, you know, is directly and intimately tied to the things that I’m talking about right now. And so, you know, for that reason alone, you know, don’t discount what I’m talking about. Don’t unplug because as you could find yourself, you know, depending on what the administration looks like at the federal level in 2024, 2025, you know, significantly impacted your ability to do your work. And so, please do stay educated accordingly.
Meg:
That’s such a good point that we exist in these systems too. And I’ll refer people back to Episode 55 as well on cultural responsiveness with AC Goldberg. And he gets really detailed as an SLP about what the breaches look like in our sessions when we haven’t done our work around understanding our clients’ intersections. And even when we have, that there will still be those breaches and how to address and repair those. But I appreciate your systems level perspective on this. It’s interesting, the folks who listen to this podcast are generally willing and eager to critique behaviorism, to critique the medical model. Our episodes on — especially our episodes on race, white supremacy, police violence, anything, generally, our intersectionality episodes are the least listened to. And I find that alarming. And you know, when I think about the ones that are the most listened to are the ones that people feel like will help them plan their session for tomorrow.
Reyma:
Yeah.
Meg:
Because people are drowning, trying to do their job and also unlearn everything they’ve learned and learn something new. What are the possibilities that having a practice of, let’s say, listening to and learning from Autistic folks who live at the intersection of disability and systemic racism, what are the possibilities that that opens up for providers?
Reyma:
Well. I mean, not to, not to just sound ridiculous, because I’m stating something that might feel so obvious to so many people. You know, I want to touch on the fact that you mentioned that the podcast episodes that focus on intersectionality are the ones that are least listened to, because professionals are wanting to tune in to the episodes that are going to help them in the immediate. That’s really alarming. That tells us, well, it tells me what I already know, you know, you don’t have Brown and Black Autistic people on your caseload. You’re not working with clients that are racially marginalized. And again, there’s a lot of systemic reasons for that, you know, the shocking disparities and access to Medicaid waiver services in this country for Brown and Black disabled people, particularly when we’re talking about waivers that are specific to developmental disability if we’re talking about a state where there’re autism specific waivers. We’re talking about, you know, a cadre of people that are white. Young, white, middle-class kids who have well connected moms, who are able to get exceptions to policies, you know, who know people at the state level who are going to help them to navigate the system, maybe get bumped up on the waiting list a little bit, you know, all of these things. And so, I just, I want to put that out there. You know, if you really, truly care about Autistic people, that should really be alarming to you. And the fact that you don’t have Brown and Black Autistic people coming to you on a regular basis should be alarming as well.
Perhaps you do. And you still think, you’re one of those people that thinks, “Well, I don’t see color, I just focus on the autism. And, you know, we can leave that race stuff out because it’s divisive.” That is, you know, a purview that causes harm and trauma. And so, for those of you that are listening that are working with racially marginalized Autistic people, and you think if you, if you just avoid the race stuff that everything’s going to be fine, that’s a recipe for disaster as far as the folks that you’re working with. And, you know, what has always struck me as odd is that professionals never have a problem with seeing a client or consumer or patients’ gender or their age. And, you know, I think that anybody who works in a clinical setting as far as autism is concerned understands the importance of tailoring services and supports as far as age is concerned, you know, that the 68-year-old Autistic person’s needs are going to be very different from the six-year-old’s Autistic person needs. If we were to say, “I don’t see age, I just focus on autism and leave out that divisive stuff,” you know, that’s malpractice, basically. And so, please, please consider, you know, taking it a step further, as many steps as the client needs you to take so that you can see their age, you can see their gender, or, you know, whatever they identify their gender experience to be, so that you see their race, so that you see anything that they, you know, either articulate as an identity or that they display as an identity.
Race in particular, because the statistics are damning as far as Black and Brown Autistic people, males in particular, who become acquainted with law enforcement and because, you know, they’re at that intersection of autism and race, that leads to, you know, a very negative encounter with law enforcement officers, et cetera, et cetera. And we’ve seen some really shocking examples of what that looks like, you know, in the media, Elijah McClain, a few years ago being probably the one that comes to almost everybody’s minds. And, you know, as shocking as what happened to him was, we need to understand, those of us who work in professional settings with the autism community, you know, although more often than not, people are not, as a result of our ignorance about race, their lives are not coming to an end in our office necessarily. That, you know, there’s a bit of a, there’s a domino effect that those of us who are racially marginalized and Autistic experience, and knowing that the vast majority of folks that are listening to this podcast are not intending consciously to cause harm, I think it behooves us all to be as knowledgeable about, you know, the multifaceted existences of the people that we work with so that we are not inadvertently becoming a domino, so to speak.
Meg:
All right, quick content warning here. I am about to remind us of Elijah McClain’s story, just in case anyone missed this. This is a story of police violence that I’ll be telling in the next 20, 30 seconds. So, Elijah McClain was in his early 20’s in 2019. He was walking home. Someone called 911 and said he, quote-unquote, ‘looks sketchy’, which is an all too familiar story. Elijah wound up being killed by the police in a chokehold while he was sedated with ketamine. So, as we know, this isn’t a one-off story. It’s not a ‘bad egg’ sort of situation. With police violence, it’s systemic. So, I asked Reyma, for those of us who are interested in looking towards this instead of looking away from it, trying to learn about the worlds of our clients and the world we live in and our role as providers, what are some of the things she would like to see people supporting Autistic folks doing to learn about intersectional inclusion.
Reyma:
Well, as a person that has done my due diligence to, you know, work in autism and Autistic spaces, I just, I want to say that probably listening to somebody like me can feel, you know, a little bit frustrating for some folks because what I’m basically — I kick things off by saying, you’ve got folks in the autism community who identify as advocates, you’ve got folks in the Autistic community that identify as advocates, and that’s not good enough, basically, is what I’ve said. And I think that a lot of folks that work in a professional capacity in these spaces have taken for granted, you know, a generation ago, well, let’s just — let’s plug into Autism Speaks or the Autism Society, and they can provide us with training and technical assistance or advisement as far as people with autism are concerned. And then, here come the Autistics who say, “No, actually, don’t. Don’t mess with them, mess with us instead. You know, we’re self-advocates and, you know, we speak for the Autistic community. And if you listen to them, then, you know, at best, the intel you’re getting is inaccurate and at worst, you’re a terrible person.” And then, here comes Reyma McCoy Hyten who says all of them are, you know, none of them are giving you good intel. And again, to reiterate what I said at the beginning of our show, that the system that we live in necessitates advocacy, necessitates people’s stepping up and articulating the plights of people that, you know, your average everyday clinician never actually encounters on a regular basis and saying, “Now we want you to care about these Autistic people. And if you don’t, then, you know, the impact is going to be that a lot of the social ills that we see in our society that we don’t necessarily associate with autism or disability, you know, they’re going to further exacerbate and so, here we are.” What was the — what was the question? Sorry. I tend to do that.
Meg:
No, it’s very helpful. Just thinking about what you would like to see providers doing and what I’m hearing from you is, we need to be listening to and learning from Autistic folks who are racially marginalized. And that’s not enough. And you want to see us critiquing larger systems of power and oppression, that necessitates all this self-advocacy in the first place. Is that right?
Reyma:
Right. Yeah, that’s correct. Because, you know, even with racially marginalized self-advocates, there’s a lot of privilege there. And, you know, they wouldn’t be on your radar if they didn’t have privilege, if they didn’t have access to, you know, resources, platforms, et cetera, et cetera. And so, that, even that skews — and I’m talking about myself here — that skews our ability to accurately, to paint accurate pictures about, you know, the most marginalized members of the Autistic community. And so, I think that the age of kind of tuning into advocacy organizations or people who purport to do advocacy, or activism or anything like that, and just taking for granted that the information that’s being provided is the most complete information about this community, and we can take it to the bank, basically, and move forward. That day is — I don’t think that day was ever here. But certainly, as we begin to know more and more about the autism experience, that is not enough. That is not, you know, that is not — none of us is a complete source of information, as far as Autistic people are concerned.
And, and the fact that we are working in a system where, you know, the ability to stay alive, if you are a multiple marginalized person, is contingent on, you know, advocates with social status and the cultural capital to connect with the right people at the state and federal level, and state your case for you. Whether or not they’re Autistic is irrelevant to me. You know, at best, that’s an inefficient way, too, for a society to operate. At worst, it leads to situations that ultimately compelled me to just kind of step away from everything. That situation being kind of a vying within these advocacy spaces, as far as who’s going to — who amongst us is going to point at the moon, you know. Who amongst us is going to be able to garner the attention of the most powerful people by pointing at the moon, because it doesn’t matter if it’s an autism space or an Autistic space. Those of us who are Black and Brown never get to point at the moon. Our organizations, our spaces, never say, “Okay, you had to be the one that points at the moon,” because it’s just, it’s articulated that, you know, we’re not going to, we’re not going to connect with the decision makers the way that, you know, moms with their Autistic children are going to connect, or, you know, white 20-something year old, upper-middle class self-advocates.
And they’re not — I’m a 43-year-old Black woman, you know. A 22-year-old, white, self-advocate from Grosse Pointe, Michigan is not going to articulate my inner city, Detroit, 43-year-old Black woman experience. Nor should they. They should articulate their experience; I should be able to articulate my experience. And we should not be stratifying these experiences in the interest of, but, you know, whose experience is going to, you know, clinch at the lapels of the powers that be most effectively. Because if we’re operating that way, we’re operating from the vantage point of white supremacy, because the lapels always belong to an older white person who is going to, you know, who needs to see somebody that most closely resembles them, or somebody that’s close to them in their life. And that’s not me, that’s never going to be me, it’s certainly never going to be somebody who’s browner or blacker than I am either.
Meg:
Okay. At this point, I asked Reyma to talk about the discomfort people might feel from all of this. Reyma has said before, when talking about listening to multiple-marginalized people, “Just because it makes you uncomfortable, doesn’t mean they are wrong.” So, when I asked her this, she said that no matter where we work — even if we work in schools or non-profits with missions that feel really ethical — we don’t get to declare ourselves as separate from systems of power and oppression just because of our life choices. We are part of them. And she’s asking us to look at them and to do the work of trying to figure out how to be a part of dismantling things like white supremacy and the systems that keep them strong. She admits this sounds simple, but is not easy. So, to wrap up, I asked Reyma to talk about some of her projects, her successes, and the barriers she’s faced.
Reyma:
You know, I think that three years ago, a window opened, you know. And that window opened because of profound tragedy. And George Floyd was murdered; we all saw that happen. And it rocked our worlds. And for somebody like me, who’s been desperate to talk about systems of oppression, and experienced a fair amount of heat prior to the summer of 2020 for wanting to engage in those conversations and being labeled divisive and experiencing a lot of personal setbacks as a result of my desire to do that, it was — I was, in spite of the tragedy of George Floyd, and the tragedy of the pandemic, I don’t want to leave that out as well, I was cautiously optimistic that we as a society had turned a corner. I was finally — and other people like me — were finally able to participate in panels and say ‘systems of oppression’ without feeling like we were gonna get a tomato thrown at us, right. And so, I went full steam ahead. You know, I, the summer of 2020, I started doing back-to-back trainings, I was the Executive Director of an agency in Des Moines, Iowa. And I was running that agency, and I was doing back-to-back trainings on disability, diversity and intersectionality. I mean, round the clock, I was working internationally. And, you know, I was a single mom at the time, and, you know, I was — my daughter ate a lot of pizza, basically. And, and I did that, because I thought, you know, if I just keep going, and really push this window, open as far as I can, you know, we can shift from Disability Rights to Disability Justice, it’s going to be amazing.
And, you know, in retrospect, what’s happened is what always happens. If you look at historical precedent, as far as momentum is concerned, it feels like there’s a great leap forward, and then there’s this backlash, or, as I call it, black-lash, that occurs. And so, a lot of the momentum that I was trying to push, I very personally experienced a lot of black-lash in the years to follow. And, you know, to be really upfront with folks, it’s a reason why I work for myself now. And I do not serve on any board anymore. The views and opinions expressed during this podcast are mine and mine alone. And, you know, so that’s why I kind of laughed and said, you know, my successes and my failures, you know. Two sides of the same coin, basically, because I am able to continue to push. But, you know, the reality is, is that it’s from a much smaller platform now. But, you know, my hope, as naive as it might be, is that perhaps another window of opportunity presents itself in the near future. And, you know, we can push forward, and then invariably, there’ll be backlash. Then, there’ll be another window of opportunity. And then, there’ll be, you know, just back and forth. And, you know, just kind of pushing this thing as much as I’m able to, as I’m able to, is what I intend to do.
I will offer to folks that are interested in what I’m talking about. I am teaming up with some folks right now to open up a space. A large space, 30,000 square feet. We are going to focus specifically at the intersection of disability, diversity, and intersectionality in the provision of direct supports. So, you know, outside of the realm of theoretical or, you know, generic advocacy or that kind of thing, you know, folks coming through the doors who have very specific needs, you know, who are awash in adverse childhood experiences and don’t care about semantics as far as advocacy are concerned, you know, have acute issues that that they need support with, addressing those, being very intentional about working at all the intersections that that are needed as people are coming through the door. We’re slated to open the space up this summer and really hoping to, in addition to working directly with people, provide training and technical assistance in that kind of thing. And hopefully, create a model that can be replicated in other places, because the fact of the matter is, you know, outside of the sound and fury of who speaks for whom is the fact that the disability community — and that includes actually disabled people themselves — is failing its most vulnerable members.
And if we’re gonna sit around and offer cliches to the world, like, “Everybody can become disabled at any time,” then we need to be a hell of a lot more proactive and preparing for that reality. We need to stop demanding that people leave their race at the door so to speak, and only focus on disability. And so, you know, in this, I never want to be a person that just, you know, kind of nags people about what they should be doing. I want to be a person that is doing what I know needs to be done, and saying, “Look, I’m doing that. This is what you need to do too, if you really truly want to be the change,” if you really truly want to, you know, engage in the somewhat provocative task of being becoming so good at serving and supporting the most marginalized of us, that you work yourself out of a job, so to speak, we create a society where, you know, a lot of our services and supports are no longer needed because we’re finally inclusive, everybody’s needs are finally being met. And that’s a scary thing for a lot of folks to think about, because how many of us are so deeply attached to our self-identity as being a helper, or being a leader in the non-profit sector? If we’re willing to kind of let that go a little bit, you know, just imagine the positive forward momentum that can occur as a result.
Meg:
Thank you so much for sharing about your project. Can you tell us where we can find that, and you, and your other work online, as well as any other work you’re doing now that you want to share about?
Reyma:
Yeah, my website is probably the best place for now, www.reyma.org. The website for the project — and I won’t disclose the name of the project at this juncture — but that website is going to be going live probably in the in the next four weeks. And so, if a person is keeping tabs on my website, or my social media, I have a presence on Facebook as well, then they’ll be tuned in once that project goes live.
Meg:
Thank you so much for all of your work and for this conversation today.
Reyma:
Well, thanks for having me.
[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.
