Frameworks for Effective Instruction and Inclusion in Sport with Joslynn Bigelow

Brendan Aylward (00:01)

Welcome to the AdaptX podcast where we have conversations with individuals building accessible businesses, advocating for inclusion or excelling in adaptive sports. Our intention is never to speak on behalf of those with disabilities, but provide a platform to share their ideas so we can make a more accessible world. Today we are joined by Jocelyn Bigelow. Jocelyn is a board certified behavior analyst, BCBA, a teacher and professional coach serving the community of persons with disabilities.

From classrooms to clinics to fields, she does not accept no as an answer. Her approach to innovation in the adaptive sport world has impacted the sport of soccer nationally and globally. Jocelyn recently started a business called Say How Consulting, LLC, to leverage existing resources for the disability community and promote creative problem solving where resources have yet to exist. Jocelyn, thanks for joining me today.

Joslynn Bigelow, BCBA (00:50)

Thank you, Brendan. And yeah, there's a reason they call us BCBAs, Board Certified Behavior Analysts, is a mouthful.

Brendan Aylward (00:56)

Yeah, I guess so. I've said it a thousand times, but struggled with it there. So we'll get into all of that momentarily, but I want to start with maybe how you got into coaching in general and why you've pursued the career that you have. So what was your first introduction to disability and adaptive sports?

Joslynn Bigelow, BCBA (01:12)

So when I was 11 years old, which was way back in 2007, I was playing club soccer for a local club in the Oregon, Portland, Gresham area. And.

Amidst the different experiences that I was having as a youth, which were not exactly positive, my mom was looking for other outlets for me because I've always had a particular passion for serving and supporting others. And the local club was starting a program called Top Soccer. I didn't really know what it was. I was just an 11-year-old being dropped off at a camp. I was told I was going to be helping as opposed to just a player.

When I got there, I was partnered with a young man who was slightly bigger than me. He wore glasses and he had Spiderman braces on his ankles, or AFOs. He was an individual who used gestures for communication as opposed to verbal expression and... for the next couple days we worked together to play soccer. I distinctly remember he was not particularly interested in much of the games. So I remember he and I spent a lot of time picking up and putting away equipment and kind of meandering around, kicking a few balls in no purposeful direction. But it was an incredible experience for myself to... realize how accessible and expansive the world of soccer is because I've had a very mixed and arguably negative experience in my soccer career and the one place I always find a home, the one place I always find what I consider to be the true value of the game is in the top soccer setting and now in the more expansive adaptive soccer community.

Brendan Aylward (03:09)

Yeah, that's a really interesting point. Cause I mean, my first introduction to Special Olympics, I was probably 15 and I took sports seriously, but maybe put a lot of pressure on myself. So there weren't always negative or there weren't always positive outcomes associated with me playing the sport individually. And I was, I don't know if I can really pinpoint it, but like obsessed with coaching and like quickly was drawn to that. But I'm surprised cause like at 11 years old, that's a little young to have a lot of like perspective and understanding of stereotypes. A lot of kids at that age are more so judgmental differences. Can you maybe speak on behalf of why you think it was different for you or why you didn't have those same misconceptions?

Joslynn Bigelow, BCBA (03:51)

I think what was different for me is a multitude of factors. Culturally, my family that I was raised around is from Oahu, Hawaii. And while I am an Oregonian born and bred, I think the cultural aspects of family and caring for the other are very much instilled in me. Another factor is I experience a lot of bullying as a youth. And I'm very much a fighter for other people. So when I was actually younger than 11 playing rec soccer, I was on one team where there was a girl who would likely be considered as having ADHD and maybe other intellectual developmental disabilities on my team and definitely gotten some fights with my teammates about treating her nicely. And one of my long time close friends I even played a year of college ball with when we were little, met her on a rec team.

She was wearing pink camouflage hearing aids. And for some reason people bullied her about that and I'm thinking those look like some dope earrings. And then life went on. So it's always just I think been second nature for me and then the bullying piece recognizing that people are treated differently for being different and that wasn't something I wanted to perpetuate.

Brendan Aylward (05:16)

Yeah, sports and similar interests appears to be a great way to bring people together. What do you think? May this, it might be too broad of a question, but how do you think we can create youth and adolescents that are more receptive and understanding of disability? I feel like it's more present now, but there's still somewhat of a disconnect.

Joslynn Bigelow, BCBA (05:36)

I think current generations, it's more inherently instilled. I'm gonna use a really random comparison, but you think about accessing the internet. Let's talk about Google search. Our previous generations developed alongside Google, whereas our younger current generations are really growing up with it. So the concept of doing a Google search is very different across the generations. This is super random, I promise I'll tie it back. I was in school and we were taught, it was a part of a lesson, it was an assignment to learn how to put things differently into a web browser to find the results that we needed. Whereas you might see my family type in one thing and be frustrated they're not finding what they want and then you have people younger than myself. I don't even know how the heck these little FBI investigator type people are finding the information they are but the CIA should be swarming with people interesting so I consider that access to information and this idea of just pushing and trying until you find what you need and want is a really cool cultural aspect that's coming up in modern American generations.

Brendan Aylward (07:07)

Yeah, so a lot of programs, the ones that you are involved in now are kind of facilitating that by putting both populations together to a degree and kind of making it normalized.

Joslynn Bigelow, BCBA (07:16)

Yeah, yeah, you mentioned your experience with Special Olympics. Special Olympics has this awesome program for unified sport, combining persons with and without disabilities together, equally accessing any given sport or other kind of program together, similar to Best Buddies and other things.

It's just becoming second nature in schools. We're seeing less and less of students being segregated. We're still seeing the specific support students who have more complex needs need. But yeah, we're just making it a part of the new culture. And um, when I was 14, I was a unified partner. My very first exposure to Special Olympics was a freshman in high school. I joined a community service club at my school, which was the only other club that really interested me aside from playing varsity soccer, and varsity soccer didn't give me a lot of time. When I joined this club, our first initiative was to do the Special Olympics Polar Plunge.

I'm not a big deep water nor cold water person and we were jumping into the Columbia River in Oregon. So that was really intimidating but there was this group of people older than myself saying hey this is fun and okay let's do it. As time went on I realized the leader of the movement also had a brother who accessed Special Olympics as an athlete or a person with a disability so really starting to connect and focused tunnel visioned person who just wanted to serve in support of helping people access anything that they really wanted to do but of course sport because I share that passion.

Brendan Aylward (09:08)

Was there a degree in special education?

Joslynn Bigelow, BCBA (09:11)

Yeah, my bachelor's is in general education actually in secondary education with an endorsement in language arts. We don't know what we don't know. So when I was looking at getting my degree, I'd started in psychology and wanted to have something that I felt had more bulk to it. More direct impact on the community I wanted to serve. But when I was looking into schools like Portland State and Concordia, I didn't know what I didn't know. I wanted to go into special education and I was told by both schools, oh you can't do SPED as a bachelor's, it's only a master's. What I didn't realize and what I didn't know to ask was, oh.

You don't have that, but I could have done that elsewhere. So all that to say, I actually like that I have the Gen Ed background. It allows me to be more versatile. My master's is through Portland State. It is a special education master's, however it's focused in applied behavioral analysis, as well as I have a certificate in autism spectrum disorder.

Brendan Aylward (10:15)

Yeah, I started with special education as well. And my, I think, initial vision as an 18-year-old was to end up back at my high school, teaching the athletes who were in my special Olympics program. I really just wanted to continue to be a part of their lives. And I found a different way to do so that allowed me to be a little more active. But last month, you were recognized by U of Soccer with the annual Adapt and Thrive Disabilities Award, as well as the Carla Overbeck Leadership Award.

The first recognized as an individual is making impact in the US's broad landscape of disability soccer. What did those mean to you and were they on your radar prior to receiving them?

Joslynn Bigelow, BCBA (10:55)

So that's an interesting question. The Adapt and Thrive Leadership Award was a nomination process. There were three public nominees for that award to be voted on by the general public, and that was myself, a gentleman from Top Soccer, elsewhere in the country, and MLS Works, which is MLS's, I believe, nonprofit charitable foundation entity. I actually have had the opportunity to work with MLS Works when I coached the MLS Unified All-Star Game this past summer in Washington DC, West Coast 1. Go West Coast, first time in four years. What? Sorry, East Coast. Anyway, that award was on my radar because one or two years prior, I was a part of helping develop that concept of the award. It was not my idea. All the credit goes to our friends at United, or US Soccer's extended national teams department, but as the leader of the Adapt and Thrive Working Group that I'll talk about later and a part of the Disability Soccer Committee through US Soccer, we contribute a lot to these different movements acknowledging adaptive progress in soccer in the American award, previously won again by top soccer coaches Sandy Castillo and Sean Dan Hauser, two really good peers and mentors of mine. So it was on my radar in that regard but I had no idea I was going to be nominated so that was kind of surreal and I really value that it's voted on by the soccer community because if what I'm doing isn't almost worthy of recognition, then I'm clearly not representing the public in the way I should be. So, that was a really stellar recognition of my efforts and a reminder to keep moving.

The Carla Overbeck Award I found out in January. I was on a Zoom call with U.S. Soccer's President Cindy Parlo-Cone preparing to talk about this next year for how we're going to be developing adaptive soccer, especially going into some major events coming in the next few years. And all of a sudden joining our Zoom call, aside from her precious little boy, was Carla Overbeck.

Previously, Carla Worden, she was the captain and a major player in the US women's national team in the 90s and continues to be a prominent figurehead in soccer as the coach for Duke. This award is not female specific, it just happens to be named after a woman. It's a second annual award. I'm the second annual awardee. I sat in the ceremony last year watching the first awardee get their award and thinking, wow, that is so cool. So to get that this year was really amazing. And I accepted that award this past weekend at the U.S. Soccer Annual General Meeting for 2024. And I started off my speech and I'll conclude my soap box rant here of. The awards that I've received recently. focus on me, but truly I want to redirect the focus on the individuals that I collaborate with to get the work done and the individuals that we're serving, not just players, but also coaches, officials, fans, and more with disabilities or serving the disability community.

Brendan Aylward (14:42)

Yeah, that's been such a hard thing to navigate for me personally as well as like getting recognition. Obviously when people see inclusion and disability, there's a visceral positive reaction. Uh, they do feel moved in some way, but like I'll share something of one of my clients at the gym accomplishing something great and the comments will be like, Oh, it's so great that you create that gym for them. I'm like, wait, that's not, that's not what I'm trying to like showcases. I'm like that, that's not the idea to be in this space because you do get so much praise. And like to me, my initial experiences with Special Olympics helped me way more than they probably helped the athletes. And it's just kind of always felt that way to me. Like this has been an awesome career. It's been incredibly rewarding. It's in many ways kept my life on a good trajectory and a good path and to be like praised for that seems weird, but that could probably be a whole nother conversation. You mentioned on that call that you were kind of highlighting maybe the next year of work or what your goals are for the foreseeable future. Anything specific that you can kind of highlight or identify?

Joslynn Bigelow, BCBA (15:56)

So in my niche role serving US soccer in the Adapt and Thrive... working group and the disability soccer committee, really just the adaptive soccer movement as a whole, we are going to have a shift in leadership but not a shift in progress with our volunteer groups. The great part of being a part of these volunteer groups with U.S. Soccer like the DSC or the bureaucratic processes so we really can push the envelope and try different things and get the word out there. For example you can see some of the tangible products we've worked on in the past that we update annually on our website unit that is representative of United Adaptive Soccer Association, an association composed of eight of the nine formal disability soccer organizations that are members of U.S. Soccer currently. Eight of those organizations came together to apply for a grant through U.S. Soccer because U.S. Soccer doesn't just dish out money to its members. There's a formal process so as to ensure that we're holding ourselves accountable and acting in the best image of the crest. And Innovate to Grow grant fund, we earned as a collective group and we're using that to further spread awareness and create more meaningful functional opportunities for athletes and coaches so that we can start to contribute to better quality programming.

So the moral of the story is going into this next year, I have a particular passion for language, which we could talk about later. We'll be updating our modern language document housed on unit as well as an interactive map of where all of our disability soccer organizations are throughout the US. We will also be creating a documentation for best practices, actually inspired by my colleagues at Move United, meetings and presentations through U.S. soccer and we'll make that suggestion to U.S. soccer. Another product we'll have in the next couple months is brief one-page type materials for other U.S. soccer member groups pertaining to how to better align with the adaptive soccer movement, whether that's intentionally adding the language of disability to their non-discrimination policies, advertising specifically that persons with disabilities are also welcome, saying any ability, sometimes our persons with disabilities don't see themselves in any ability. And then the biggest thing we're gonna be contributing to is coach education alongside the formal extended national teams department with U.S. Soccer. We'll be looking to influence getting persons with disabilities educated and educating all of our coaches, regardless of ability on how to be more inclusive minded.

Brendan Aylward (19:16)

Yeah, a lot of time back there. Those are, those are all topics that I kind of had on my radar that I want to talk about the disability language and the interactive map and all that stuff. Extended national teams. There's currently nine, five, five categories, men, women, and one that's co-ed, I think, right?

Joslynn Bigelow, BCBA (19:31)

Yeah, so there's, in the extended national teams department, these teams are the same as the senior national teams, the Christian Pulisics and the Alex Morgans of the world. Those senior national teams, there's actually in US soccer, 27 different national teams, because you have the senior.

You have several levels of youth national teams, and then you have the extended national teams which incorporates different playing pathways such as beach soccer, futsal, which is my personal favorite, and then to play, to be clear. My adaptive soccer teams are still my favorite, favorite. And then we have five specific two persons with disabilities national teams. Those five are men's and women's deaf soccer, or cerebral palsy soccer and coed power soccer for persons using power wheelchairs.

Brendan Aylward (20:32)

And hopefully we had Nico Calabria, who's the captain of the US Amp soccer team on the podcast, who I'm friendly with. He's come out to the gym to record some stuff with us. He said they're in the process of hopefully maybe becoming one of those, or that it's kind of a lengthy process.

Yeah, so like I said, U.S. Soccer is really very much about the movement, but like anywhere else you go in the general population, some of our peers without disabilities need, kind of need a shark tank model. Bring the product to them, give them a clean, succinct presentation, and they'll absorb our efforts function through a lot of red tape so that we can explore what is best representative of the public and what's most useful.

So as we're talking about membership, that is distinctly a US soccer function. There's three levels of membership specifically for disability service organizations, DSOs, as they're called in US soccer. Tier three is where all of our badges exist. We have Amputee Soccer, American Youth Soccer, Organization EPIC.

Blind Soccer, CP Soccer, Deaf Soccer, Down Syndrome Footsall, Dwarf Soccer is working on their membership, Power Soccer, now Special and Fix North America, and then USU Soccer's Top Soccer. So that's actually 10 organizations, one of which is still pending membership.

Amputee soccer, for example, as I understand it, they are hoping to achieve tier one status as a member in the coming years. Tier one is what CP, Deaf, and Power have achieved. They still have tier three, which is essentially their grassroots or developmental model, and then tier one is just their senior national teams. And rather than the nonprofit that started it managing it, U.S. Soccer absorbs it and some of the prerequisites include having both fully inclusive gender identity pathways so amputee soccer is developing their women's pathway to be eligible to apply among other things that we're required to do to align but yeah, hopefully we'll be seeing Nico Calabria and Jovan Booker and my personal close friend Alexia McKeeley Gracing the men's and women's fields for US soccer in the near future.

Brendan Aylward (23:18)

She was, she goes to Ithaca, right? She plays soccer at Ithaca, yeah.

Joslynn Bigelow, BCBA (23:21)

Yeah, she was playing for Ithaca. I believe she's moved to a different school. I don't wanna speak for her. I know that she is traveling abroad right now, learning abroad, so she's doing incredible things, so definitely a person to watch.

Brendan Aylward (23:39)

Yeah. When I talked to Nico, kind of the conversation was like the path to profitability and sustainability and because he wants to transition into making it kind of his full-time career. And we just kind of talked about what that route looks like. So it kind of like you said, shark tank sort of thing like, it can be as well-intentioned as possible, but there also has to be a direction to make it sustainable and kind of have standards. So I know he's putting a lot of work into getting it there. What was the process like for you developing the Down Syndrome football program?

Joslynn Bigelow, BCBA (24:17)

So Down Syndrome Sports of America approached US Soccer in 2021 saying that they wanted to build a Down Syndrome national team or national team for players with Down Syndrome. Just to preface, I do default to person first language as much as possible, but in our soccer pathways where use it's very commonplace because that's the title of the organization to proceed with disability than soccer. Anyway, DSSA came to US Soccer saying we want to do this, US Soccer passed it down the chain to the volunteer organizations who can have more of those functional conversations and help the development of that program. So Kelly Trevor, one of the co-founders of DSSA, met with one of my mentors and colleagues, Ashley Hammond of CP Soccer, who was and is stepping down soon as chair from the Disability Soccer Committee.

Basically saying, hey, we want to do this, we just don't, we need some help to get started and to develop. And I have a particular vested interest in serving people with intellectual and developmental disabilities, done so in the classroom, in clinics, in the community, and of course on the pitch. So it just made sense. So I joined their team as head coach and have supported the development of their soccer slash futsal environment. Footsall is five-a-side street soccer so it's played on a textured court in an ideal world with a slightly smaller weighted ball and it does have out of bounds on like indoor soccer and it's just the best sport.

It's so great, all about technique, footwork. Speed is a part of it, but not the entirety of it, which is really great for our athletes with Down syndrome. Now I also wanna note scheduled soccer programming. These are just further opportunities for eligible individuals to play. Our athletes with Down syndrome are deeply involved in top soccer, in epic, in Special Olympics. However, when you put athletes disabilities on the same pitch, you'll see a variation in ability. Athletes with Down syndrome have not only cognitive impact but also physical symptoms of their disability. So the Down syndrome sports of America just wanted to create a pathway even more geared towards specifically the population of athletes with Down syndrome to level the playing field.

Brendan Aylward (26:58)

Yeah, the whole, um, I guess concept of creating inclusive programs, people with and without disability seamlessly existing versus, um, I don't know what a better word for it would be verse as a, like, other than like exclusive. So like only athletes with Down syndrome on the pitch there, there's advantages from a performance standpoint for those athletes to maybe feel more successful. What have been, why do you think DSSA was initially started instead of, because I was reading a little bit about that it was some parents that wanted to get their children involved. Why do you think they went that path instead of just have them involved with Special Olympics or a pre-existing program?

Joslynn Bigelow, BCBA (27:34)

I'm going to speculate, so I just want to be clear that I'm not meaning to speak for those incredible families who started DSSA. My perspective is our athletes with Down syndrome, for example, have a unique disability category. That is also a spectrum. And a lot of times if you put them on the same playing field as say a person with autism spectrum disorder around the same developmental level, the person with ASD is going to move faster, potentially process faster, etc. So I think the founders of DSSA truly wanted a level fair playing field for people with Down syndrome and with like-minded humans who understand that specific disability category. I know that one of my athletes, Kaitlyn Trevor, she is a female on our co-ed national futsal team. Incredibly well spoken, just a great athlete so impressed by her constantly. She's doing all the sports, all the things. And it's a testament to how true advocacy can be effective because sometimes our athletes with Down syndrome get quote-unquote left in the dust. When you talk about persons with intellectual and developmental disabilities, one of my personal frustrations is only offering them individual sports like swimming and track and field. They participate very well, however, Coaching a team sport with people who all learn differently is tough. So I was just all about their mission and I align with the concept that there is an appropriate way to have distinct pathways.

Joslynn Bigelow, BCBA (29:16)

And kind of going back to all of our badges, as I call them, all of our DSOs, three of those DSOs have recreation at their core. Top soccer, epic, and Special Olympics. Participation, just an opportunity to get out there.

Special Olympics and the rest of our badges also offer more development, meeting the player where they're at, but now starting to push towards the soccer model that we want to see. And then we have those five extended national teams and our other DSOs that are developing their national teams because it's not just about participation. We're past that point. We're at a point, as you know, as a disability community where we also deserve to play at the highest levels. Carson Pickett's a great example of an athlete who's played in the mainstream pathway, frankly Alexia McKeeley as well, to train amongst their peers without disabilities and be pushed in the same way and held to the same expectation.

Brendan Aylward (30:27)

Yeah, that last PC expectations has always been big for me. Like we're applying for a grant due on Friday for a research project on high intensity training for individuals with Down. Yeah, well, it's mostly done at this point, but high intensity training for people with Down syndrome, how well they can respond to it, whether it's more effective than lower and moderate intensity and we've shared.

Joslynn Bigelow, BCBA (30:31)

Not stressful.

Brendan Aylward (30:50)

We've shared the premise of the study with a lot of Down syndrome researchers. And, uh, frankly, some of them have like really low expectations for people with Down syndrome. Uh, we have a lot of people with Down syndrome at our gym. So I see the spectrum. We got some people that it's a challenge to get them consistently moving with intent and intensity. But there's also people with Down syndrome who are deadlifting, a lot of weight, squatting, a lot of weight, and they're really strong and, uh, very eager, very eager to be active. So to make a gross generalization, like all people with disabilities exercise at a low intensity seems a little unfortunate to me. So it's been interesting to talk to some people that are like only in the research space. So they just kind of live only in the literature as opposed to in the lived experience. So that's where I guess that's kind of where my role is. I'm not one of the principal investigators, but I'm the one that's gonna be providing the facility and providing the training for the athletes and stuff. So that's interesting to me. I think on that whole premise of like, whether there needs to be programs for specific diagnoses. I'm sure as you would agree, as long as there's options for them to participate in kind of whatever environment they're most comfortable and feel most successful in, that's kind of what inclusion is, I guess, the opportunity to choose, yeah.

Joslynn Bigelow, BCBA (31:53)

I think a point of interest for me is all of these organizations I'd venture a guess started with a parent or somebody with a loved one who just deserved more and deserved better and it's blossomed into a lifestyle, a mindset and I'm just I'm grateful to all of our founders, to all the people that drive the game and drive access because this isn't exclusive to the pitch, we're just in a soccer-based conversation right now.

Brendan Aylward (32:38)

Yeah, absolutely. How do you apply your work as a BCBA to coaching?

Joslynn Bigelow, BCBA (33:00)

That's a great question. So as a BCBA, I represent the applied behavior analysis field. And ABA has kind of a bad taste in some people's mouths, especially in the intellectual and developmental disability community. Some things we're guilty of as BCBAs is being incredibly pretentious, using vernacular that isn't accessible to the different clientele and populations that we're working with. In addition, we like to hear ourselves talk as you can tell. So there's some couple things but also we believe that all behavior is communication. We believe that behavior can be shaped. But I want to be very clear that when I apply my ABA fundamental practices that I believe I can influence behavior but I do not believe that I can change behavior because the only thing I can control is myself. And oh my goodness, I don't have that down. But yeah, so as far as applying ABA to the sports field.

Joslynn Bigelow, BCBA (33:44)

It's really rooted in the ABCs, antecedent behavior consequence, what happens immediately before, during, and after a behavioral event. And if all behavior is communication and all behavior is everything we do, kicking a ball is a behavior. Coach delivers the cue, kick, they kick. We say, nice kick.

Sometimes we say unlucky and I don't know how much of anything is truly luck.

The structure and the reinforcement principles of ABA are highly valuable and highly needed in Sports training at the lowest and the highest levels of performance. I think that our Highest levels of performance in US soccer our C license B license a licensed coach Really get some of those principles without knowing they're doing that Then then again we have athletes that leave the sports because they're not feeling motivated, engaged, and reinforced in their efforts. And unfortunately for a lot of our staff, it's hard to hear, oh, you need to change what you're doing, but more or less, we all have the power to influence behavior, so how can we influence not only how we coach, but also how they receive information and self-manage? As a school-based, BCBA currently I have a contract with a local very small rural school district and it's interesting ABA again doesn't have a great taste in Oregonian mouths I know a lot of incredible BCBAs in the school systems and in clinics where I started and I Try to be careful not to push The scientific pieces. It's just data driven.

Soccer is very much data-driven nowadays, so is education, so on and so forth. It's really how we make those best decisions. I know you're going to be intimately familiar with the grant that you're applying for in the projects you're pursuing. The basic summation is using data-driven, evidence-based practice to be effective in the various roles is how I apply my being a BCBA.

Brendan Aylward (36:22)

Yeah, absolutely. So all behaviors have a function, whether they're positive or negative. Maybe it's someone regulating themselves or I think the issue that I've read about in the ABA space is just defining what's acceptable for behavior or trying to fit everyone into one like mold, I guess.

Joslynn Bigelow, BCBA (36:22)

Mm-hmm. Yeah, and that's the hardest part when you talk to especially people who have been in the field for a long time and they need support from somebody like me aside the fact of gender identity and age and all these other pieces um They might hear me say Lost my train of thought what did you just say sorry?

Thank you. I, uh, coming out of the winter, which is my busiest time of year in disability soccer, so I'm a little fried.

Brendan Aylward (37:05)

Um, no, just like you were, uh, so we were talking about how maybe ABA encourages people to all kind of move to the same behaviors, uh, and makes generalizations across, uh, what should be expected and what's not advantageous.

Joslynn Bigelow, BCBA (37:13)

This idea that especially in the ABA field that we expect people to act a certain way is a fundamental misunderstanding. Applied behavior analysis publishes or like the ABA field has all these concepts and theories of practice to implement positive change for our clients. It's all individualized. We have basic recommendations for best practice.

We say hello, but we don't always say the word hi to every single person. We might change the words we use, our inflection, our delivery based on context, wearing our supports to the individual. An example of a stereotype in ABA is we try to train auditory, or I'm sorry, oral... stereotypical behaviors for persons with autism spectrum disorder that are prone to repetitive sound making that we just don't do that. No, somewhere along the line somebody didn't communicate effectively and maybe instituted principles or said something that was discriminatory towards the verbal stereotopies with people with ASD, but that's truly not the case. More than likely for that one individual, those verbal stereotopies were really interrupting maybe their academic environment or making it hard for them to get employed, or it was interrupting their ability to advocate for themselves with their doctor. So a BCBA was brought in to help influence, not necessarily change that behavior. So that being said, everything is tailored to the individual. There are things that can be generalized across people, places, and things. However, no matter what we all are meant to go into it, each context is unique. Each person.

Brendan Aylward (39:42)

Yeah, we can kind of apply that systems of reward and reinforcement, even informally within the gym or with coaching. Usually that first session with a new client is just kind of identify identifying those ABCs like, what exercises were they motivated to do? Which ones did they enjoy? If they responded negatively to it? What was the antecedent before that? How can I like… maybe structure it in a way where it's present the challenge to the individual, give them something they enjoy as a reward, present the challenge, give them something they enjoy as a reward. So you kind of inform, yeah, you just informally kind of do that, but I think that's one way where working with people with disabilities are kind of having my special ed background made me more effective as a coach. It's just like I kind of inherently adopted those things. And we were working with athletes who were nonverbal or non-speaking. I know there's different ways to communicate that now. And when you learn to communicate with someone who does so differently, it makes you a much better communicator for all people.

Joslynn Bigelow, BCBA (40:22)

Yeah, the principles of the things that we do, we don't have to have the same education background roles in the world to be using similar principles. Just like I say about disability, it's just a label for a set of symptoms various psychological practices, special education, they're all just executing the scientific method. If I do this, then this will happen and then we prove it or we are proven wrong and then we try again and adjust the variables.

I do want to just go back to how much I appreciate your introduction to AdaptX in that it's meant to represent and support the community of persons with disabilities, but not to speak for any one person. And that's essentially what the Modern Language Document, or the MLD, is all about. U.S. Soccer recognizes it, however it was composed and put out into the world at large by the Disability Soccer Committee and our colleague Josh Pate, Dr. Pate, who is a researcher within Disability Sports.

Brendan Aylward (41:19)

Yeah, absolutely.

Maybe continuing on the topic of language and communication a little bit, you helped develop US Soccer's first modern language document pertaining to disability language. Now the landscape of language and etiquette seems to always be evolving person first versus identity first and it seems to be very individualized, but like what, maybe what were the key takeaways as you were developing that document and how did you go about doing so?

Joslynn Bigelow, BCBA (41:53.375)

So it's an evidence-driven document that's meant to give suggestions for best practice when talking to and about people with disabilities. You'll notice I'm saying people, not athletes, because I'm trying to generalize more of my language from now on to include our coaches, officials, fans, etcetera.

The Modern Language document is reviewed annually in the summer more so by all of our disability soccer organization member groups representing their own pathway. So a person from dwarf soccer might look at the document and say it's okay to say dwarf in this context. Default to little person. Small stature. However.

And then you'll have persons in the deaf hard of hearing or who are blind, visually impaired, letting you know, hey, here's what's current in our space. So there's the informal input of the DSH and some of our other colleagues to look at modern literature and ensure that we are kind of covering our bases. It's just suggestions. The number one suggestion is always to default to person first. The number two suggestion, which really should be the number one going into this next year, is it even necessary to label disability? I will say two regarding the word disability. Disability isn't a bad word. Our international federation to differentiate para from disability because para is owned by Paralympics and we don't want to contaminate or like cross over on branding. So disability was put out by FIFA in 2022 as their official language to describe that pathway. However, I think there are movements within the US landscape that will have us moving more towards adaptive because the soccer itself is not disability, it's adaptive.

It's laden with different models that have accommodations or modifications to the traditional game, talking to or about people with disabilities in the near future. However, again note that second point was really the first of is it necessary.

Brendan Aylward (44:57)

Yeah, that number two point where like, is it even necessary has always been something that's been tricky to me, like trying to market to people with disabilities. So you do have to use some sort of language, like from the perspective of just marketing my gym, I have to specify somewhere that we support people with disabilities just because it's not assumed that all gyms would. So you do have to kind of differentiate, I guess, to some degree, but we only have to use the terminology for the sake of differentiation, I guess, or I hope that evolves over time and I find a more comfortable way to do so. Is the document readily available to the public?

Joslynn Bigelow, BCBA (45:00)

Yeah. I also think because it's presuming that you need the language, it's also important when we're outside of the soccer sphere for people with disabilities. A colleague of mine, Nelson Aquari, former youth national team player for U.S. Soccer, I believe former board member and current member of the Athletes' Council for U.S. Soccer. He's a close ally of ours.

However, I don't believe that he identifies as a person with a disability, but he has attended some of our disability soccer committee meetings this year. He's working with me on some external relationships and like I said, it's just an advocate. So sometimes it's helpful to know how to specify that a person doesn't have a disability or isn't a member of the disability community in that they have one, but they're a partner and ally.

Right? And then you also have the word offend. Offend is such a malleable concept. What is a value or not a value to one person may not be to another. And that's why we're giving the suggestions for language.

Protect yourself as a professional and protect the dignity of the people you're talking to and about and let them tell you how they want to be addressed or talked about, etc. as opposed to making mistakes right off the bat.

Brendan Aylward (46:58)

Yeah, I think etiquette and communication, some of the ambiguity associated with it is, is one of the things that is a big barrier for a lot of people in terms of interacting with disability, it's almost been ingrained since you were a younger kid to not stare at the individual with a wheelchair, don't say something that would offend them. And then it just kind of perpetuates this narrative of don't talk to someone who looks different than you. Um, so it's like, yeah.

Joslynn Bigelow, BCBA (47:07)

And to be clear, the census is very informal. It's a Google sheet, or I'm sorry, a Google form. But we love our Google products over here. This is not an ad. Yeah, it's not an ad for Google, but hey, Google. Sponsor me, just kidding. You can delete that. Google form the census. So the census goes out to each of our disability soccer organizations every year. So going into this year will be our fourth year of asking, hey what were your numbers, what did you do, etc etc, and the year prior and what do you plan to do this year next.

So it's really, and holding our disability soccer organizations accountable for really tracking who's involved. The addition of special and VIX North America to our membership this year will be an integral. Numbers are not everything. It just, it supports the awareness efforts we're trying to make in the soccer community of, hey, we are large in number and important just as you all are.

Brendan Aylward (47:55)

Yeah, and once you foster that relationship initially, then you probably don't then again have to refer to them as disabled or anything, and then you don't even have to worry about whether it's person first or identity first. But the census of players participating in US soccer with disabilities, you conducted as well. Am I correct in that regard? And kind of what did you learn through that assessment?

Joslynn Bigelow, BCBA (48:16)

That census also gets their input on the modern language document, on our interactive map on the United Adaptive Soccer website for where our disability soccer organizations are located around the United States. And the census also collects really those incredible ideas for products like the ones I just mentioned.

Brendan Aylward (48:27)

Yeah, Google makes some of the best products. So yeah.

Joslynn Bigelow, BCBA (48:54)

So let's start with the demand has to be there, right? You might think it's a good idea, but like we were talking about with the awards earlier, does the public even care? Like, do they want that information? The answer is generally yes. You can go on Google Maps and type in.

Top soccer but it's gonna bring you to a bunch of stuff that is usys top soccer and then other stuff And it's just going to be really confusing especially because So many of our adaptive sport providers are non-profits They're volunteer led organized managed and our volunteers don't always have the time to go update their address Or other things simple as that. So just The demand is there the logistics are tough. I respect everybody in our community just trying to do the right thing. This concept started in 2021. I was co-leading with my colleague Kirsten Winbiel, the Adapt and Thrive Working Group through US Soccer and serving the Disability Soccer Committee's agendas. And the map was being developed by our group. So we had a lot of incredible people on our group.

Brendan Aylward (50:05)

The interactive map is something I'm selfishly interested in learning about. So you created interactive map to help players find disability soccer programs in the U S I think we have a similar goal of trying to build out a network of inclusive and accessible, like road races, five Ks, half marathons, et cetera, and then connecting adaptive athletes, individuals with disabilities that want to participate with those races. Um, and they can ensure that the course is accessible for a wheelchair user, uh, et cetera. What did, um, what was that process like of building it out? And there's definitely some, there's like some threshold where it's not really super useful until you have such a large database that someone can like enter in their zip code. So it's like, you have to start very small and recognize that for the first year or two, it's not going to be a very effective, I mean, you probably have a larger network to the point where it can grow quicker than ours can, but I guess, yeah, what did you learn from building out that interactive map?

Joslynn Bigelow, BCBA (51:03.491)

Were doing research state by state, where are their programs offering soccer to players with disabilities? Didn't need to be disability exclusive, but we needed to see active language around disability. The results were weird. We're also using young people who are still learning their Google searches and pulling information. Information was not readily available. And of course, 2021 was coming out of the pandemic. Pandemic taught us a lot, lot better off in a lot of ways as business people and information gatherers from the pandemic, but we are still implementing those new skills. And things just weren't readily available and easy to access. Through that effort, it really made it clear we needed a map. The map is so simple.

Brendan Aylward (51:04)

Maybe even to the degree of like, what software are you guys using? Or program, or program, yeah, exactly, yeah. Film in.

Joslynn Bigelow, BCBA (51:33)

Google has a free feature to build your own map. I learned that after the first year of struggling to create one, and we paid an outside service to do it. CP Soccer was so kind as to donate the money towards that. That being said.

That map wasn't what my vision was. And then I learned that I could make my own map when I was working for Special Invicts Oregon. And I made a map of local programs, so community and school-based services for Oregon. Because Special Invicts North America had this beautiful model of a map. And I'm like, ah, I'm gonna steal that idea.

So, similarly, that's kind of just how simple it is to put something together. We have really awesome people from USU Soccer, Thomas Swinsky and Dave Robinson, who helped really build the map product that you see now. And yeah, it's as simple as starting with a free tool. I think if more people made more maps, we'd know where we're going.

Brendan Aylward (54:52)

Yeah, that's why I selfishly ask, because we have a search function on our website of people who have taken the adaptive fitness course that we teach. So hopefully at some point, someone with a disability in Oregon says, hey, this is my zip code. Is there anyone nearby that's comfortable and competent working with people with disabilities, and they can be connected with them? But like I mentioned earlier, it kind of has to get above a certain threshold If there's only 30 people in the country, then you're probably hard-pressed to find someone in your zip code But if there's 3,000 then maybe you will so laying the foundation right now and then hopefully it will grow into something but Entrepreneurship versus a safe consistent job.

Joslynn Bigelow, BCBA (01:01:11)

What has that transition been like for you mentioned kind of leaving the classroom and taking on projects that you're passionate about?

Brendan Aylward (01:01:37)

That's been an interesting, I guess, part of the experience for me too is getting to choose, I guess, to a degree of what projects I work on, like whatever excites me. Like every five or six months I'll meet with a consultant who's been awesome. But I feel like every time I talk to him, I'm like, oh yeah, I'm working on this now. And he's like, oh, well, I think last time we talked where you work on something else. I'm like, well, I guess that's part of the luxury of kind of being an entrepreneur. You get to choose what interests you, and it's allowed me to more or less work non-stop since I opened my gym is I don't get tired because I get to like kind of choose what I want to do I guess I don't know I feel very fortunate in that regard.