Often attempts to educate communities on disability inclusion, equity and representation take place through PowerPoints and trainings. But what if we started thinking outside the box on how we alter perceptions of disability?
This week on the Disabilities Beat, we’re highlighting a local organization taking a different approach to changing how we think about disability inclusion and advocacy. WBFO’s Disabilities Beat Reporter Emyle Watkins speaks with Outside the Box Associates about how they use a podcast, hiking trips, speaker talks and other forms of inclusive community engagement to challenge perceptions of disability. We also discuss what goes into starting an organization led completely by people with disabilities.
FULL INTERVIEW AUDIO
FULL INTERVIEW TRANSCRIPT
Emyle Watkins: Thank you all so much for coming in today to chat with me for WBFO. To kick things off, I'd love to have each of you introduce yourselves.
Alex Jusko: Hi. I'm Alex Jusko. I am a life coach and psychic. Spiritual empowerment coach is what I like to go by.
Mike Rogers: I am Mike Rogers. I am a professional, I consider myself a professional self advocate, and I am a founder of Outside the Box Associates.
Lee Allan Hartlieb: I am Lee Allan Hartlieb. I run my own radio station online called L.A.'s HartAbility Radio on Live 365.
Gwen Squire: I'm Gwen Squire, and I am a part-time advocate support professional for People, Inc. But I am also a founder, like Mike, with Alex, with Outside the Box, and Lee.
Emyle Watkins: Mike, how did the idea of Outside the Box Associates come about?
Mike Rogers: Well, it was interesting, because at the time, you know, a lot of people were looking for different ways to express themselves. And we were, you know, Gwen and I had worked for the the Self Advocacy Association [of New York State], you know, we had an AmeriCorps project. And the director of that at the time, in this area, suggested that maybe Gwen and I do our own thing, right? So at the time, we had a partner, who has since retired, thought about this, you know, that we could be a little bit more outside the box, more innovative than just your typical awareness presentations, which we think are great. A lot of us have done them for a living. We think that's great, but I think going beyond and focusing on inclusion is something we wanted to do. So, we started the process. We had some hiccups, and then we started up again, and we brought in Alex and Lee, and here we are.
Emyle Watkins: You know, I read on your website that quote "it is our dream one day, that we will be seen exactly as we see ourselves: human beings living liberated lives empowered by our disabilities." Alex, I'm wondering if you can tell me a little bit more about what you're working on and hope to achieve, and how you're taking things outside the box.
Alex Jusko: Yeah, we're all about the mindset as well as what we do. I mean, we have all sorts of activities we've done. We've supported people with disabilities in presenting. We've hosted events where we've had people present about what they're passionate about, and that's been really cool. But ultimately, it's about empowering, not only people with disabilities, to recognize that their disability is empowering and it is powerful and to empower people in general about people with disabilities, and to educate in that way. We're also working on various goals to focus on employment and focus on working with the community at large, to promote the idea that people with disabilities have a lot of capabilities. They just need to be given the chance to show what those are, and then also to empower people with disabilities themselves to recognize that they are powerful beings and they can accomplish whatever they want. They may not do in the same ways as other people, but they can still do it. So that's a big part of that.
Mike Rogers: To put it in another way, and because I love the way he was talking about all those stakeholders, right?
Emyle Watkins: Hmm.
Mike Rogers: You have the community, you have people with disabilities. You support each other in a lot of ways. It's kind of like a stew. But I think a lot of times when we talk about disability, we only look at it from the disability lens, it's like, okay, what can we do as people with disabilities, but at Outside The Box Associates, we want all stakeholders, able bodied people, people — all different kinds of disabilities, to come together, because that's really how you live. You don't live in a box, or you shouldn't. So we really want to focus on the fact that we're all living in this world together, and we gotta all come together
Emyle Watkins: Well, and if I can ask, as a follow up to that: I know when I say "disability pride" to other people, they're like "pride and being disabled, like, what are you talking about?" And [we're] talking about living empowered lives.
And it's so interesting because we often see like these hyper positive ideas of disability, or we see these hyper negative -- How do you balance that as you pursue this work?
Alex Jusko: Again, I would say that it's all about mindset of what you carry with you and how you present yourself to the world and how you want to go about... whether you... you can see yourself in many ways but the two ways that I see the most is either you're a victim of yourself or you're a victim to the world. And you can either be empowered by the virtue of understanding, "hey, you know, I have a greater struggle, in a sense. But the thing is, I can empower other people with that struggle and acknowledge that." And use that in a way, to to bring people together and to help them realize that their strength is more about acknowledging themselves as a full identity and acknowledging that they are whole as a whole being not broken, not distorted, not disabled... and you know, in a weird sense... you know, we all are kind of functioning. I like to use the analogy of we're all in a jungle together, and we're all cohabitating. You know, you're not going to ask a fish to fly or, you know, things like that. But the fact of the matter is, we coexist, and we're trying to coexist the best we can but what we can do is empower each other and empower the world that we live in to be more accommodating to that empowerment, so.
Emyle Watkins: That's great.
Mike Rogers: It's all a matter of perspective, you know? Most of the time I don't identify as a person with a disability, because I'm not disabled. I'm capable. You know this... So, I will switch back and forth somedays, depending on the situation and if what I'm saying benefits the people that I'm saying it to. So, sometimes I'll identify as a person with a disability, but sometimes I go, I — I don't feel like that all the time. I'm capable. And it's only society who has labeled us that throughout the centuries.
Emyle Watkins: And it's society that's kind of made that [be perceived as] a negative label.
Mike Rogers: Yes. It doesn't have to be. That's why we want to bring together these things so people learn through experiencing who we are, not just by taking a class and saying, "Oh, that was nice" and then doing nothing after that, you know?
Emyle Watkins: Absolutely. And Gwen, I saw that your group also plans accessible hikes.
Gwen Squire: Mhmm.
Emyle Watkins: Tell me more about why that's important.
Gwen Squire: We went on a hike, last year was it? At a park, I forget the name of the park. I'm sorry, Mike and Alex might remember. But anyway, it was really cool. We took, we met a few people that were interested in going with us. They contacted us on Facebook, through Facebook, and we went to that park. And some of the park was, some of the like, the trail was a little rickety and bumpy, and one of the people was using a [wheel]chair that they don't normally use, so they were kind of leery about going with us, so they ended up actually staying back.
Gwen Squire: But anyway, when Mike and Alex and I went on the trip, you know, the park and the hike, it was really nice. And it was very accessible for the most part. I mean, was parts of it bumpy? It could have been a little bit better? Yeah, but we would really like to start doing that, because I myself didn't even, wasn't even aware of this park, or that, you know, there were quote, unquote, accessible parks like this.
Emyle Watkins: Well, and it seems like a lot of these hiking groups, they're geared towards specific groups of people.
Gwen Squire: Right.
Emyle Watkins: And the interesting thing is you're planning accessible hikes, but like the mission of your company —
Gwen Squire: Yes
Emyle Watkins: — it's expanding out so everyone can be a part of it.
Gwen Squire: That's what... exactly. We want everyone to feel included, and you know, to be able to come on those hikes. Like I said, I've never really been on a real hike like that before, and it was just awesome.
Emyle Watkins: Is creating that space intentional so people with disabilities aren't just included, but so people without disabilities are engaging in a space that isn't so much like a class or like a you know, "here's how to include people with disabilities?"
Gwen Squire: Right. I would like to have everybody included, not just people with disabilities. We all would. I remember in like, in school, I would like get like stuff together different like events and stuff to include both people, because I don't want to just include people with disabilities and shut out people without I mean, we don't want to be shut out. So one of our goals, as I believe, is just to include everybody and have everybody just enjoy themselves and get to know us, and get to know people with disabilities and people [without], you know, disabilities are just people.
Emyle Watkins: Yeah, that's fantastic.
Mike Rogers: And it always doesn't have to be a structured way. You know, a set up way. We didn't know any of those people that came, they just heard about the the event, contacted us and showed up, just like anybody else would do in life.
Emyle Watkins: Absolutely, and I know that you also have a podcast. Lee, I'm wondering what people can expect when they listen to your podcast.
Lee Allan Hartlieb: Anything.
Mike Rogers: Yeah, you know, we come up with topics that we think are relevant and then just talk about them. And then eventually we're gonna have guests that know about a topic, but we want the podcast to be free flowing. We don't want it to be just stuck on one, you know, one subject, if somebody has a different idea —
Lee Allan Hartlieb: Yes.
Mike Rogers: — we can do that.
Alex Jusko: Yeah, it's not just about education. It's just more about, "hey, we're people, too, and this is what we talk about, and these are the issues we talk about." We've had a variety of issues, a variety of topics, such as like disability and spirituality. We've had topics about... I'm blanking now because we're here, but, yeah, we've had a ton of topics, and it's been amazing. And the cool thing about it is, what we get to do with this is we get to bounce off each other and we get to gain different perspectives, not only from each other, but we also get to explore those perspectives in a way that gives us the ability to recognize, "hey, not only are we not alone, but these variety perspectives are just like anybody else's perspectives." So it's really, really cool, and it gives us a platform then to say, "hey, we're here, we're present, we're with you. We understand what you're going through." So that's really, really cool.
Mike Rogers: And you know, we don't always have the same perspectives. You know, people get this idea that people with disabilities, we all think the same thing, we all act the same way. And, no, we don't, you know. I mean, just, you know, an example, Alex and I could disagree about something disability related. We don't always think the same way and have the same perspectives. And I think that's something you don't always hear.
Emyle Watkins: Absolutely.
Mike Rogers: People always want it to be a unified message, instead of, you know, telling the world that you might have different ideas.
Emyle Watkins: Well, and I know that different ideas in the disability community are kind of rooted in who's speaking at the moment. And I know that a lot of times, organizations that are meant to serve people with disabilities, like us, aren't always led by people with disabilities, but your organization is fully led and run by people with disabilities. I'm wondering, are there certain barriers to starting an organization or a company if you do have a disability?
Mike Rogers: I wouldn't say that there are necessarily barriers, but I think people aren't used to that. I remember, because right now we have a DBA [doing business as], and I remember that a lot of people were like, "so you want to start your own thing?" And like, they're like, "who's helping you?" And we're like, "we're doing it together." You know, because people always get this idea that you have to be helped by the able bodied world, like there's got to be a reason why you're able to do something. And you know, if you have the drive, you can do it. That's the simple thing we want to tell people, is if you want something, you can make that happen. And yes, if you need help, get the help,
Alex Jusko: Of course. You know, one of the big things I think, that I love about Outside the Box is basically the message is, if you believe it, you can do it. And it's a big thing, because a lot of people with disabilities come from this mindset of, "oh, I'm broken, and so I can't" and it's like, but you can! You can and you will, but it's a matter of believing in yourself and also utilizing the supports that are around you. Whether they're able bodied or not, the fact that matters, by virtue of working that in that way, you're able to empower yourself, and that's super important. I realize I'm overusing the word empower, but just really works here.
Mike Rogers: Yeah, no, no, it's good. It's good. Yeah. And I think, you know, you have to sometimes think outside the box. You can't think of well, our service system will do this, or our government will do this. Sometimes you have to take an idea and and go with it. Be confident and proud of yourself for thinking about something or developing something, and don't wait for you know, our service system to fix itself, or our government to fix itself, because really, you know, or put the money where they need to put it, you know, just start something that you feel is important.
Emyle Watkins: And for someone who wants to start something they feel is important, Gwen, what advice would you have for someone who wants to start an organization like yours?
Gwen Squire: I think Alex and Mike kind of summed it up pretty well. I mean, at first, you don't want to listen to people who are saying, "oh, that's just a pipe dream," because I've been told that actually, by, you know, family members, well-meaning family members and stuff, that it was just a pipe dream to start this. And I was like, oh, no, it's not, you know, we can do this, and I think you just have to have that perseverance and just the ability to ignore the negative stuff when people are telling you, "you can't do this or do that." Like how we all grew up with our disabilities, and if we all just kind of did what everybody else said, where, you know, okay, "you can't learn to do this or do that when you grow up," then we wouldn't.
Gwen Squire: But because we had the perseverance and the attitude of, yes, I can do it, we did it. So, I think we can accomplish this very well. I know we can.
Emyle Watkins: Awesome.
Gwen Squire: Yeah, that would be my advice. Just don't give up and just don't listen to the negative.
Emyle Watkins: Any final thoughts?
Mike Rogers: I mean, we're relatively new, but we are coming strong. So you're going to be hearing stuff from us. We rebranded our podcast as "Planet Capable."
Gwen Squire: Yes.
Mike Rogers: So, because we wanted to make sure that it was something unique and different. So, and we believe we're capable, as are you, if you're listening out there with a disability.
Emyle Watkins: Great, well, thank you all so much for joining me today.
Gwen Squire: Thank you for having us.
Alex Jusko: Thank you.