Matt from With Rolls and No Luck & Shirene Hayes of Super MEro ~ 919

Tim Villegas:
Who is ready for a double episode? Today on the pod, we have two fantastic guests. First is Matt from the With Rolls and No Luck podcast. We discuss what it is like to generate income all while being on Medicaid. Our second guest is Shirene Hayes, the creator of Super MEro and The Code, a resource for educators to utilize in their classroom. My name is Tim Villegas and you are listening to the Think Inclusive Podcast presented by MCIE.

This podcast exists to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. To find out more about who we are and what we do, check us out at thinkinclusive.us, or on the socials: Facebook, Instagram, or Twitter.

A couple of quick announcements before we get into our interviews. First, join Dan and Samuel Habib for a virtual screening of their current film project, My Disability Roadmap, on Thursday, May 26th at 3:00 PM Eastern Time. Following the film, we are holding a Q&A session with Dan and Samuel facilitated by me. Then MCIE will announce the start of a new audio documentary project, which will feature interviews with change makers from inclusive schools around the United States and families of children with complex support and communication needs on their journey to inclusion. Register at tiny.one/mydisabilityroadmap.

Second, for everyone in the Metro Atlanta area, Think Inclusive will be holding our first ever in-person meetup at Independent Grounds in Kennesaw, Georgia at 11:00 AM Eastern, Wednesday, June 15th. If you are an advocate for authentic inclusive education or want to be, join us to discuss what inclusive schools are doing to support each and every learner and what to do to start an inclusion conversation with your school or district. Our meeting will be informal and you are highly encouraged to purchase drinks and treats from the Independent Grounds Café before, during, and after the event. Please feel free to drop by any time between 11:00 AM and 1:00 PM on Wednesday, June 15th.

I am so glad you’re here. Thanks for listening, subscribing, and rating us on Apple Podcasts or Spotify. And now our interview with Matt from With Rolls and No Luck and Shirene Hayes directly afterward.

Tim Villegas:
Today on the podcast, we have Matt…

Matt:
Yo!

Tim Villegas:
Who is… insert bio here. [Laugh]

Matt:
Yeah, I’m a man of many hats.

Tim Villegas:
Excellent. Well, let’s get right to it. Matt, why don’t you introduce yourself to our audience of educators?

Matt:
Sure. So I’m Matt. My last name will be redacted for reasons that will be explained a little bit later. I also go by the internet alias, Samurai Fooks, and I am a disability advocate in my real life with my full legal name. I am a podcaster. I am a graduate of Wake Forest University. Oh, and I should probably mention, I am a man with a disability. I have cerebral palsy, to be specific, for those who are curious. And I like to think that I’m kind of a poster child for the effectiveness of inclusive education, but you’d have to ask other people to confirm that one way or the other.

Tim Villegas:
We had a short chat before you came on and you told me a little bit about that. So why don’t you tell our audience, how did you get your start with disability rights?

Matt:
It was basically an organic thing. I’ve always been a very outspoken individual. The initials of both my first and middle name are M, so my parents used to say that the Ms stood for motor mouth because I never stopped talking. And honestly, being a person with a disability—anybody with a disability who listens to this will probably understand this—if you have the ability to communicate verbally and you need assistance from people for things, then you basically just verbalize things literally for survival reasons, pretty much as early as you can.

So it’s a very natural thing to voice your opinion, voice what you think is important, voice what you need, etc. And it really just started when I was in late middle school, maybe, when a teacher made a group for students with disabilities to help educate other students in the school about what life with a disability is like and try to reduce some of the stigma and all that kind of thing.

And it was off to the races from there and I’ve literally never stopped doing it. I turned 35 a little over a week ago.

Tim Villegas:
Happy birthday.

Matt:
Thank you. And so I’ve been doing this nonstop for over half my life at this point.

Tim Villegas:
That’s great. So let me ask you a question about that first experience. Some educators want to educate people on disabilities by simulating them or having experiences that show what it’s like for people to have a disability. What was it like for you to be able to share about you?

Matt:
I appreciate you asking that. Honestly, this is something that we’ll get into a little bit later with what I believe we are planning on discussing, but I don’t have a problem with simulated experiences like that. I do think they have some value to people, for sure. But the things that you’re able to simulate are doors, or a lack of curb cuts, or mostly physical stuff—mostly physical barriers. Occasionally, if somebody is doing the simulated experience of being in a wheelchair, they might understand over the course of that afternoon the way that people treat you differently just because you’re in a wheelchair.

But for me personally, I’ve realized over this long period of time that the worst parts are the parts that people don’t really see, that they don’t really talk about, and that people sort of just ignore. Or if they’re not outright ignoring it, then when people with disabilities do bring them up, they kind of go in one ear and out the other.

Ableism is a lot more subtle and insidious than I think a lot of people tend to think or realize it is. So those simulated disability experiences are great and well and good, but that’s coming at a problem with a hatchet or a chainsaw where you probably need to use a scalpel.

Tim Villegas:
Yeah. I forget who I was talking to about these simulated experiences, and it was like in order for an able-bodied person to experience what it’s like to have a disability, the whole society would have to change to be inaccessible to you to really experience that.

Matt:
A hundred percent. There are so many things that are so ingrained in our society that are the absolute opposite of accessibility that it is literally impossible. The closest thing I can think of is what a lot of people of color go through on a regular basis, or even people on the LGBT spectrum. Nothing but love and respect for all those people. I feel like we’re all in the struggle together.

Not to get off the plot too much, but the point is that’s the level of a lot of the ableism that goes on. And I think a lot of people soothe themselves and say, “Well, Willowbrook isn’t open anymore, and we have the ADA, so go us.” And it’s like, okay, it’s better. That stuff is true and that stuff doesn’t suck, but there’s a lot of stuff that does. So can we hold off on giving people medals here because there’s a lot going on that’s very, very bad.

Tim Villegas:
Yeah, you’re right. Well, we don’t want to lose the plot here. You’re right. So the big reason why we wanted you on is to talk about employment and disability benefits. This is not a topic that we normally talk about on Think Inclusive, because we’re mostly focused on school. But I think that understanding the process of people with disabilities graduating from high school, then getting a job—and sometimes it’s really hard to get a job, or sometimes you get a job and you don’t get paid even minimum wage—is important.

So what are some really important things for non-disabled people to understand about employment for people with disabilities?

Matt:
This is why the tangent I just went on wasn’t entirely me losing the plot. I would say the biggest thing that able-bodied people don’t realize is a barrier is everything related to employment.

I make money as an independent contractor. I graduated from Wake Forest University. I have a lot of experience in my field. I have worked very hard to build the resume to get where I am, to try to build myself up such that I could be a “professional” who has the typical life trajectory that a lot of other people have. And when I make money as an independent contractor, I tend to make pretty good money.

Here’s the problem. If you are a person with a disability who needs Medicaid benefits—and if you’re a person in a wheelchair, I would say there’s about a 98% chance, if not more, that having Medicaid benefits would be extremely beneficial to you, if not outright necessary—because there are certain things that only Medicaid covers.

Personal care is the basic example. For me, I need personal care. I need people who can lift me, who can help change clothing, who can help with certain activities of daily living. Private insurance? There is no private insurance in the United States that comes even close to covering any of that stuff because there’s not enough profit margin in it.

So then you find yourself in the situation where you need the Medicaid benefits in order to be able to fulfill the daily living activities to literally live your life. But if you work too much or make too much money—“too much” being in air quotes—then you run the risk of losing your Medicaid benefits.

So it’s a terrifying minefield of, okay, I’m somebody who is working right now. I offer independent contractor services at such and such a rate. People are generally very willing to take the baseline rate for the services that I offer without too much question. But then I need to navigate the minefield that is: how do I make this money without running afoul of the government and them saying, “Oh wait, you’re making money, so you’re not disabled anymore, so we’re taking away your Medicaid benefits.”

That’s the part that really, to me, is the biggest thing that nobody really talks about.

Tim Villegas:
Do you have any thoughts about what Medicare for All would do with that? Not that we’re even close to anything like that…

Matt:
I think that’s the closest thing we would possibly get to a magic bullet to this situation. I would see that as something akin to what the ADA was for physical barriers. I think Medicare for All, or a similar program, would be that for the financial and professional barriers that currently exist for people with disabilities.

I would probably weep with joy on the day when I legitimately just did not have to think about this stuff anymore. Most of my job—and this is my job job, not fun stuff—is literally talking in some form or another. And it’s so hard to explain to people that even though my primary job skill is talking to people and connecting to people and educating people, I am, like many others around me, also part-time accountant, part-time lawyer.

We have to know so much about so much because if we don’t, then unfortunately our society has shown they have no qualms whatsoever with saying, “Oh, by the way, you don’t go here anymore. You go here instead.” That’s kind of what our society defaults to. It’s getting better—I don’t want to be an unabashed cynic on your podcast—but it’s slow, slow going.

Something like Medicare for All, if it worked the way that it should, would feel like I could put away the part-time law school dropout hat. It takes so much time and energy and emotional investment and it just is not a good time.

I’m sure I don’t need to tell anybody, but you gotta do what you gotta do. And I’m trying to follow the rules. In case anybody connected to the government is listening to this and figures out what my full legal name is, let me just state for the record: unequivocally, I’m trying to follow the rules here. I want to play the game by the proper legal channels. Not trying any funny business. It’s not my fault it’s so complicated that it feels like building a Rube Goldberg machine. I’m just trying to build the Rube Goldberg machine to make sure that my life doesn’t get blown up. If you can make it simpler for me, I would be happy about that.

Tim Villegas:
Noted. Well, I want to make sure we get some time to talk about With Rolls and No Luck. You talked about the beginning that you’re a podcaster, and I know it’s not directly related to your advocacy, but what started you on the path of becoming a podcaster?

Matt:
It’s more connected to the disability advocacy stuff than you might think. It started because I also write for a Wake Forest sports blog, being a Wake Forest graduate. I’ve been doing that for a little over 10 years now. The website I write for is part of a family of blogs, so we have a couple of mass mailing things.

When the pandemic first started, sports shut down for a while. Levi, one of my fellow castmates—he is our intrepid Dungeon Master for season one—sent out an email and said, “Yo, I’m trying to figure out something to do with my time since sports are dead. Who would be down to start a Dungeons and Dragons podcast?”

Tim Villegas:
Why don’t you explain a little bit, in case somebody doesn’t know about Dungeons & Dragons, how that works?

Matt:
What we do is what is referred to as an actual play podcast. Dungeons & Dragons is a tabletop game, which means it’s not like a video game. There are rules, you have dice rolls, and it’s theater of the mind for a lot of people. Some people use actual maps with figurines and stuff like that. Our cast just likes to do it in what is termed theater of the mind.

The way I describe it to people who’ve never played is: imagine if you combined improvisational theater and fantasy settings with a little bit of video game-ish stuff in terms of successes and failures, and then add a little bit of character-based drama in there.

Tim Villegas:
Great. So if you’re listening and that sounds like your cup of tea, make sure to check With Rolls and No Luck wherever you listen to podcasts. Or follow @noluckpod on Twitter.

Matt:
Oh, and real quick, let me just say why it’s relevant to my advocacy. First of all, the character of Thrug is not disabled, but I decided he was going to have various things about himself that were othering in some form or another. Part of that is because I wanted to create a character who normalized certain things that were a little bit different.

The other reason why it’s relevant is it helps keep me sane. It’s an escape from the constant hamster wheel of having to do all this stuff. It makes me a better advocate because it re-energizes me and allows me to be somebody else for a while.

That’s also why I’m on the podcast today with a not super closely guarded alias—because sometimes we get a little blue on the podcast. Not necessarily for the kids. But we let our hair down a little bit. For me, that’s such an important thing because I almost never do that.

So even though it seems not relevant whatsoever, it makes me a better advocate. And of course, I would love it if With Rolls and No Luck became successful enough that it could also tap into business ventures somehow. But for the time being, it is nothing more than a labor of love and I’m okay with that.

Tim Villegas:
Excellent. Well Matt, it was great having you on the podcast. We appreciate your time.

Matt:
Great to be here.

Tim Villegas:
Today on the Think Inclusive podcast, we have Shirene Hayes, who is the chief encouragement officer of what she has created as the greatest superhero to walk the face of the earth: Super MEro. Shirene is an award-winning author, accomplished keynote speaker, serial entrepreneur, and world traveler. Her greatest accomplishment is being the mother of her two grown sons, who are the greatest humans she knows. Shirene believes in the power of one and lives the African proverb of “each one, teach one.” Shirene, welcome to the Think Inclusive podcast.

Shirene Hayes:
Thank you so much, Tim. I’m so excited to be here.

Tim Villegas:
To get us started, would you just introduce yourself to our audience of educators?

Shirene Hayes:
Absolutely. Well, you pretty much put who I am in a nutshell. My biggest accomplishment, my biggest title that I wear, is that of mother to my two sons, who are the greatest humans that I know. They embody everything it is to be a Super MEro and The Code, which we’ll talk about here in just a few minutes.

These principles—the three of us have lived them our whole lives. I grew up with the elements of The Code as a child, but I didn’t even realize it at the time. Now I’ve put a label on it: Super MEro. It’s an easily digestible platform that anybody can wrap their mind around on how to show up as your best self in all that you do. And it’s relative—it’s for each person. There is no right or wrong answer. I’m so excited to share this information today.

Tim Villegas:
So tell us about your “why” in creating Super MEro. You said this is something you and your family have lived. Where is this coming from and why did you formalize it in a way that can be digested?

Shirene Hayes:
I grew up in a home where I constantly heard “try,” “maybe someday,” the whole shoulda-woulda-coulda. At the same time, I had two of the best mentors I could have ever had: my beloved Nana and my father. They created a world for me where anything was possible, but I also saw the dreams they had completely melt away.

They constantly said, “Shirene, you can be your best self, just decide what you want to be in your life and just do it.” But I saw them settling for less. I remember at the age of eight or nine thinking, can y’all just make a decision here, please?

So I grew up realizing at an early age that now is always the right time. If there’s something you want to do, you just have to do it and figure out a way.

Along with that, I’ve struggled with mental health issues my whole life. The second leading cause of death for our children is suicide. At some point, we as a society have to say enough. That’s my intent with this platform.

We’re not really taught how to love ourselves. We’re just expected to love our neighbor, love those around us, be kind. But we’re not shown how to do that. That’s what The Code does. That’s what Super MEro is all about.

There’s a CDC statistic that in 2017, 2,400 children committed suicide. It’s time to say enough. What I speak about and what I’ve written about—I know it works. It pulled me out of the depths of hell. In 2016, I had a nervous breakdown. I was literally ready to drive off a bridge. I made a call, ended up with my little five-day “staycation,” and came out on the other side. If I didn’t have these principles in my toolbox, I probably wouldn’t be talking to y’all today.

That is my biggest why in creating this platform. Along with that, judgment, hatred, and racism—I am on a mission for the rest of my life to eradicate those three things. Those are learned behaviors. Children are not born judging others, hating others, or being racist. If we can instill these principles in our school system, what a better way to change our world.

Tim Villegas:
Yeah. And it sounds like this is very personal to you.

Shirene Hayes:
Extremely.

Tim Villegas:
Would you put Super MEro in the category of social-emotional learning?

Shirene Hayes:
Completely. And it’s not just geared toward children. Children are the main focus, but it applies to all of us. When we buy a computer, it’s a clean slate. Those are our children. It’s so much easier to add programs to a clean computer than to fix one full of viruses. That’s what happens when you end up like me at 50 years old with all this inner dialogue that’s not positive.

With The Code, we have eight elements: thought, imagination, truth, love, intention, belief, acceptance, and repetition. Everything that has ever been created started with a thought. When you take imagination and build on that thought, that’s when you can create wondrous things.

We’ve broken it down into an eight-week course for educators. When I go into schools, the first week we talk about thought, the second week imagination, and so on. Children have such a profound sense of imagination, and as they progress through life, it gets beaten out of them.

Tim Villegas:
On your website, you have a poster of The Code. But if educators want to use this in a structured way, do you have a curriculum?

Shirene Hayes:
Yes. Since we live in a virtual world, I’ve been doing Zoom webinars with classrooms. If they reach out to me through either website—the C Kindness website or the Super MEro website—I can send them a PDF. It’s drilled down for elementary, middle school, and high school because the examples differ by age.

Tim Villegas:
Do you have examples of how educators have used The Code with their students?

Shirene Hayes:
The thing I want educators to know is this is not another thing you have to do. Teachers are my heroes, and they are stretched as far as they can be. I work with them to integrate this into their classroom without adding to their plate. For example, thought can be pulled into a history class, imagination into algebra.

Tim Villegas:
So why don’t you go through how people can get in touch with you and any webinars or courses you have for our audience?

Shirene Hayes:
Thank you. I want to read you something from one of my books:
“Someone will always be prettier. Someone will always be smarter. Someone will always be younger. But they will never be you.”
Freddie Mercury wrote that, and it sums up Super MEro.

You can reach me at either theckindness.com or supermero.org. On the Super MEro website, I have my three books available for purchase, plus a whole life guide series based on The Code. I can also send it to educators.

Tim Villegas:
Shirene Hayes, thank you so much for being on the Think Inclusive podcast and sharing Super MEro with our audience.

Shirene Hayes:
Tim, thank you so very much. I’m so happy and grateful I was able to share this information. Get your capes ready!

Tim Villegas:
That will do it for this episode of the Think Inclusive podcast. Subscribe to the Think Inclusive podcast via Apple Podcasts, the Anchor App, Spotify, or wherever you listen to podcasts.

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