Dorsey Ross Show
Hello, my name is Dorsey Ross, and I am the host of the Dorsey Ross Show. I am a minister and itinerant speaker. I started the Dorsey Ross Show to interview people of faith who have stories of faith and overcoming trials and difficulties. In this podcast, you will hear stories of all kinds. Some will make you laugh, cry, and even say I can connect with that story or that person. I would love to encourage you to check out these stories of faith, encouragement, and inspiration my guests share on the show. I hope these stories give you hope, to get you through your week and your life. Please share them with your family, friends, co-workers, and anyone who needs a little touch of encouragement today.
Dorsey Ross Show
The Swiss Army Knife of Disability Advocacy
What does it take to become a "Swiss Army Knife of Disability Advocacy"? For John Fela, it began with the birth of his son with autism who is now 16 and nonverbal. His journey from confused parent to national advocate reveals the profound challenges and unexpected gifts that come with raising a child with disabilities.
The path wasn't always clear. John candidly shares his initial struggle to accept his son's diagnosis and find his footing as a father when traditional parenting roles were upended. "What I struggled with in the beginning was finding my role," he explains. "I couldn't be the breadwinner, I couldn't manage all the therapies—so who was I as a parent, as a husband, as a father?" This identity crisis eventually led him to discover his true gifts in advocacy, networking, and relationship-building.
Education presents particular challenges for families navigating disability. John offers valuable insights about the realities of public versus private schooling, cautioning parents not to be deceived by appearances: "Anything looks good on a website." His family ultimately made the difficult decision to place their son in a residential facility a thousand miles from home—a choice requiring tremendous surrender but proving beneficial for their son's development.
Communication with a nonverbal child requires creativity and patience. Through a combination of body language interpretation, basic signing, and assistive technology, John has found ways to connect with his son. He emphasizes the importance of addressing individuals with disabilities directly rather than speaking about them as if they aren't present: "He doesn't speak, but he does hear."
The conversation takes a powerful turn when John discusses the vital importance of community support. Having transitioned from feeling completely alone to building a national network, he now helps other families find their lifelines. His work with Joni and Friends, a global Christian disability ministry, allows him to help churches create welcoming environments for people with all types of disabilities—visible and invisible.
Looking toward the future, John confronts the reality many special needs parents face: what happens when they're no longer there? With his son being an only child, creating intentional community becomes even more critical. Who will check on him, celebrate birthdays, or simply offer a hug?
Whether you're navigating disability personally or seeking to better support those who are, John's story offers profound wisdom about finding purpose through unexpected challenges and building communities that sustain us through life's most difficult journeys.
John Fela's Website
Let me know what you think of this episode?
Support the Podcast.
https://buymeacoffee.com/dorseyross
Social Media Links,
Instagram
https://www.instagram.com/dorsey.ross/
Facebook
https://www.facebook.com/DROCKROSS/
My Book
Amazon Book Overcomer
https://bit.ly/4h7NGIP
Hello everyone, thanks again for joining me on another episode of the Dorsi Rose Show. Today we have a special guest with us and his name is Song Feller. He is seeking to trademark the title of the Swiss Army Knife of Disability Advocacy advocacy meaning that he is involved with disability and special needs advocacy on a variety of levels. He is the parent of a 16-year-old son with autism who is also non-verbal. He is a former elementary educator for almost 20 years who transitioned into doing advocacy on the side several years ago and now has a growing national platform through his personal work and also with his employer, zoni and Friends, which is a global Christian disability ministry. John, thank you so much for coming on the show today. Absolutely Thank you for having me. What is Now? I usually ask an icebreaker question and if you could go without either music or books which would it be?
Speaker 2:That's a tough question. Yeah, that's a really tough question. I'm a pretty literate person. I do love to read. I do enjoy reading. Obviously I love to write, but I love to write. But if I had to give one up, it would probably be the books, because I don't know that I could go without music. Music is just my motivation and muse and I'm also a person who I can't ever just kind of work in silence or sit in silence. You know, I always need noise, even going to sleep. We have a white noise thing going, so yeah, so I I don't think I could do it without music, for sure yeah, I would probably agree with you on that, when I'm a big music guy as well.
Speaker 1:What has been your greatest challenge as a special needs father?
Speaker 2:good question question. You know I will tell you that, like most parents, when we started out with our son's diagnosis, we really struggled. We really struggled in the beginning, you know, first of all because your natural inclination as a parent is to try to fix your child right, try to find a cure, try to find some therapy or treatment that's going to do it. And in most cases, especially with something like autism and developmental disability, you know you may find things that are helpful, but there isn't any one magic bullet that's going to fix things. And so I think for me what was challenging is one to learn to first of all accept my child as he was and understand that he was still my son. He was still an incredible gift in terms of you know just his nature and personality and just you know the joy he kind of brought to everybody around him, to everybody around him. But what I also struggled with in the beginning too was kind of finding my role. Meaning I think what happens when disability comes into a family is that everything gets squeezed and problems that exist specifically in a marriage kind of get exacerbated. They get blown up. So for our family you know my son's mom, my now ex-wife she was an excellent mom. She's an excellent special needs mom. She was somebody that could always manage the therapies and the insurance and the appointments and all of that and that was her gifting and that was great and she was a very type, a personality, so that's what she leaned into. I didn't do that, you, I didn't do that.
Speaker 2:Most when you have disability most dads at least kind of the default is, well, I'm just going to throw myself into my work, I'm going to work very hard to support the family, pay for all of these things, and that's something that I hear from moms and dads all over. And the reality was I couldn't do that either, because I was never the breadwinner. My wife always made more money than me. So it became an issue of who was I. Who was I as a parent, as a husband, as a father? You know what kind of defined me.
Speaker 2:And over time, what I learned was that I was able to lean into my gifts, which really is advocacy, but in a bigger sense networking, communication, relationship building. Advocacy, but in a bigger sense networking, communication, relationship building. And so now I can kind of say that, while my son's mom is still that detail-oriented person, I'm more of the big picture guy. I'm the one who has the relationships with different organizations and also other people around the country that I can ask questions from, get advice from, get direction from that type of thing.
Speaker 2:So it really came down to. You know, get advice from, get direction from that type of thing, so it really came down to for me was not just who I was as a parent, who I was as a guy, because I think it really brought a lot of things into question and it puts you in such a pressure cooker that you really sometimes don't even know where to turn for support or help. And again, that's another big thing that I always talk about is getting support, getting community around you, building some intentional relationships with people who understand you. In the beginning we definitely didn't have that either, and that's, I think, also why it was a real struggle.
Speaker 1:Right. How has your son's disability affecting his choices or opportunities when it comes to education and independence?
Speaker 2:That's huge for him because of the level of nature of his autism. You know, he will never truly be functionally independent. There's really nothing he can do totally by himself, right, that doesn't mean that he hasn't learned and grown, but you know, it'll never be something where he can do totally by himself. Right, that doesn't mean that he hasn't learned and grown, but, you know, it'll never be something where he can do it by himself. I'll tell you a struggle early on, when he was younger, again, we weren't really sure exactly what the best education environment for him was. Now, his mom and I both had a background in teaching, but this was still our first child and you know, again, even though I actually had, most of my experience was in elementary, but I did have some preschool experience, but you know, I wasn't, you know, an expert on early childhood by any means. So you know, we tried some different things. We tried some different environments like private daycare, montessori, which actually I have a long background in Montessori education, and some of these different environments had some advantages. But the problem was, again, because he didn't develop any true level of independence where he could do some things by himself or most things by himself, because he always needed that support. What we really found was a lot of the environments that we thought looked good or presented as okay, this might be ideal for him. The reality is that they didn't have the right support for him. And one thing that I often always talk to parents about as well is, you know, when you're having this conversation about public school versus private school, because you know there's a default especially where I live in the greater Chicago area, there's kind of a default to say, well, don't send your kid to a public school because he's just not going to get a good education. Well, that's not always the case, right? And it's not to say I've worked at some good private schools. There are some good private schools out there, but private schools, at the end of the day, only have so much in terms of resources. Essentially, a private school is just a small business right, one-on-one with him all day, just really needed a very supported and accommodated curriculum for his needs. That's something the public school is built for and technically funded for. Now again, is every public school great? No, of course, not case.
Speaker 2:What we learned pretty quickly was okay, private school was not going to be a fit for him. Where do we go. So we actually had to make the decision because we didn't really like the public schools where we lived at the time. So we decided to kind of move heaven and earth, sell our house, move into a much better town with a much better school district. You know we definitely got some support from family along with that as well, but we were able to do the transition and he got into a great school district that he actually wound up, you know, going through all of elementary school, middle school and into high school.
Speaker 2:However, this last year at his public high school, it was extremely challenging and we found ourselves almost back to that same place where we were when he was a very young child, meaning the public school now could not meet his needs. Now, some of that was not necessarily their fault, because he kind of moved into this phase where he started to become slightly more aggressive, more challenging to work with. He had a variety of physical issues that were kind of affecting all of that. So that wasn't all their fault. But at the same time they were pretty clear with us that they didn't think they could meet his needs either. So what we thought could work for, you know, throughout high school and into. You know the transition years, the transition program years.
Speaker 2:We had to make another choice and this choice wound up with us placing our son at a residential facility as well as a day school in Wichita, kansas. So and that's about a, you know, that's about a thousand miles away from us. So that was not a first choice but it was the best choice given. You know his needs and the support that he required at this time. I can tell you that, as difficult of a decision and transition as that was, especially for me as a parent, I can tell you he's thriving and he's doing great. But there's so much surrender you have to do as a parent in order to make that choice right and to put him in a place where, ultimately, it's for his greater good and the best intentions of everybody in terms of what's right for his life moving forward. But it still doesn't make it easy when you have to make those choices.
Speaker 1:nonetheless, yeah, absolutely Absolutely. Now, when you were mentioning about the schooling system and some of them not being that great and not having the resources you know for him care, or they don't have the amount of special needs kids in the school system, it's a great question and here's kind of how I try to explain it.
Speaker 2:So if you attend a public school right and you have a child with a disability and your child has an IEP, that IEP is a legal document and that IEP is going to outline what your child needs in terms of so many minutes of, let's say, this form of therapy. You know, when it's available at the school, this many minutes or maybe a dedicated one-on-one they need to spend this many minutes in, let's say, like a resource room or in a dedicated special ed room, that type of thing. The problem is this Many schools and I have worked at public schools on the south and west side of Chicago where even kids that had the IEPs the schools didn't have the resources in terms of they didn't have enough staff so they couldn't supply a one-on-one. They didn't have the therapists in-house. Sometimes the therapists would come in from, let's say, like another school setting, but then if they weren't a person dedicated to that site, you know they weren't there all the time, like resource room. But even in that case, when it wasn't staffed properly, they just couldn't have the students there, you know, as long as maybe they needed to.
Speaker 2:So you know I would talk to parents about really kind of advocating for themselves, because the reality is is that by law, the school needs to be meeting those needs and that's a legal document. So, in theory, a person could, you know, pursue legal action, if they wanted to, against the school. In theory, a person could, you know, pursue legal action, if they wanted to, against the school. Unfortunately, a lot of the families just weren't aware of, maybe, the totality of their rights or maybe how to even engage that process. It was just well if this is what the school says, okay. And likewise, you know, when you have like, where my son attended school for years, you know that was a more affluent setting, so they could afford more staff, they could afford more resources, they had all of these things right.
Speaker 2:And so what it comes down to and sometimes here's how I use the example, maybe, let's say, from like, using like a retail analogy you know you can have the same product at two different stores, right, and I can go to one store and the product is, let's say, 25% cheaper. Well, I'm going to go to where it's cheaper, probably right, because why not? It's the same thing, but why is it more expensive? Well, yeah, there's markup and there's all these different things, but a lot of times it also comes down to the service you get at a particular store. Or let's say, you order something online and if it's more of a seamless process, if the customer support is better, if, let's say, there's some kind of an issue, you know, a lot of things factor into that and a lot of times it's the service you get, it's the support you get. So I sometimes will use an analogy like that to say you can have the same product in two different places and, yeah, you probably don't want to have to spend more for the same thing. But depending on what you're getting right and you know again, even, let's say, in the example of buying a new car, right, you could purchase the same car, two different dealers. But if one dealer is going to give you better service, if they are going to benefit you more throughout the lifetime of that car, making sure that you're taken care of and you know, maybe there's discounts or deals that they give you along the way or something like that for being a good customer, those are all things that play in.
Speaker 2:And so I use that analogy with public school to say you know, you could send your child to a school in a challenged area again like where I was on the south or west side of Chicago could send them to a more affluent area in the Chicago area. They're still required to get the same education right. So on paper it should be the same, but the problem is some places have the resources and some don't. It's that inequality. Now, again, by law, you know there's X amount of dollars that you know are supposed to be appropriated to every child and every special ed student as well. But again, it's all of these fringe things. Right, you know, if you walk into the school where my son went to elementary for years and you walk into some of the buildings that I've taught in, you can clearly see the difference, right, and again, it comes down to the resources and the materials and the staff and the training. So what I, again, always caution parents about too.
Speaker 2:And then to go back to that discussion about the private school, okay, it's also a conversation of you can walk into an environment that looks great. You know, and, as I tell people, anything looks good on a website. You know you can make anything look pretty on a website. Likewise, some of these environments you can walk into and you know it takes your breath away. But what's the quality of the education?
Speaker 2:What are the qualifications of the staff?
Speaker 2:What is the level of their qualifications?
Speaker 2:How much background and experience they have, specifically when we're talking about disability right, when we're in an environment like that, what do they have to offer?
Speaker 2:How are the staff trained?
Speaker 2:What materials and resources do they have?
Speaker 2:And in many cases, when it comes to like more of a special ed environment or working with kids with disabilities, they don't really have that because, for the most part, that's usually not their focus, unless it is their focus, unless it's a school dedicated for that.
Speaker 2:If it's not, you know, then you're going to have some lack, and I actually tell people you may be much better off at your local public school, even if you don't think it's a better education. The reality is is that don't be deceived by how something looks, either on a website or when you first walk up to the door. Yeah, it's great to have a nice environment. We all want that for our kids, but what is the actual quality of the instruction? What is actually going on behind the doors? What's happening inside the building? That's what people want to be aware of, and so I often coach parents, go to schools, talk to the staff, talk to the administrators, take a tour, get a feel for it. Don't make an assumption just based on maybe you know what other people have said or maybe, again, what you're just maybe hearing or seeing online, because that's not always accurate.
Speaker 1:Sure, how would you advise my listeners and even people in general, when they approach your son, who does have autism and who is nonverbal, to interact with him? Or do they interact, you know, with you and your ex-wife or his mother, and if they're an egg, to interact with them, or should?
Speaker 2:they interact with him? Yeah, and that's a fair question too. You know, the one thing that I always you know if new people are with him, or you know whether it's, let's say, in a social environment or in a school environment working with him. You know, we always encourage people to engage with him, right? Because the other thing that I didn't mention is my son is also nonverbal, so he doesn't speak. Now, he will utter a few words at a time, but you're not having a conversation with him, right? But what we remind people is that that doesn't mean he's nonverbal, but he does hear, right? So he is taking the language in and so, even though you're not getting the output, the reality is that if you're speaking to him or speaking to him rather than at him, kind of a thing you're trying to engage with him. He's probably going to understand you. Now, is he always going to do what you'd like him to do or go along with everything? No, you know, obviously, but at the same time, you know the same advice that I would give to anybody working with a person with a disability cognitive, physical, whatever treat them like a person, right, we start with treating them like a person. You know, everyone has some different needs. Everyone has some different challenges. Ok, how about we start by treating you like a person and then maybe, if there's something you have a question about, coaching people up, whether it's school staff or people in his environment? One thing that we actually used as a tool that I think was very valuable was whenever he would start, let's say, a new school year at his school so like a new class, and it might be some of the same kids, but some different kids too, whether it was in a school environment or at a Sunday school, at church, what we would do is we would actually show up and speak to the kids and we would explain hey guys, this is who Chris is. Chris is a little different. He's not going to communicate like you. He's probably going to have maybe some different behaviors. But guess what? Let me tell you all the stuff Chris likes. Let me tell you all the things he likes to do. Let me tell you the things that you know make him happy or put a smile on his face. If you can engage him that way, then great. You know, you've made a new friend with him, and I know he would very much appreciate that.
Speaker 2:So a lot of it also, too, is kind of getting out in front of it. I know that there is a fair amount of shame and stigma with parents when they have a child with. That has challenges and you know, a lot of times it's okay. Well, you know, some families are more um sensitive about, you know them kind of being in their own shelter environment. Some families do want them included with everything and and in the mainstream classroom and all that and that's great, um, but at the same time time get out in front of it and really embrace, you know, the kids and the environment and the staff. So they know one, you know a little bit more about who he is. But two, they also know that they've got a line of communication to you as parents and this way then you know that just kind of helps things later in the year. If something comes up or if there's a question about something you know, obviously they know that you're available for them.
Speaker 1:Going off on what you said there with you know the parents. You know growing up for my own self, you know my parents, you know allowed me to go out and you know. You know you know go out with friends, have my own. You know. Go out with the baseball team, and you know, play basketball and football and whatever else. You know I could do and you know figure out for myself what I could and could not, could and could not do.
Speaker 2:Yeah, and likewise with my son, you know, for example, he doesn't really play sports because he just doesn't have the coordination for it, but he likes watching things on TV, like he likes watching football with me, he'll watch basketball, kind of thing. And again, it's tough for some parents, especially when it's like dads who have like a son with autism, because a lot of times they have an expectation dads who have like a son with autism, because a lot of times they have an expectation Boy. I really thought that my kid would play this sport, or we'd go fishing or hunting or whatever we do, and the reality is, is that, okay, some things might not happen, but that doesn't mean they can't still be a part of it on some level. Like you know, we used to have a basketball hoop in our driveway at the house he grew up in, and you know I'd go out there with him and I'd shoot the basket and or shoot the ball at the basket.
Speaker 2:Whether I made it or not, he thought it was fun or hilarious, he'd clap, he'd, you know, laugh about it, kind of thing, and then he would try some of it too, and then we'd pass the ball around. So, whatever you can do, do that Right, because, again, it might not look the way you expect it to, but that doesn't mean that that person stop being your child, that they don't enjoy those things, that they just don't like that togetherness Right. And that's the thing that I really appreciated about you know, all those early years with my son was I really just treated him like any other kid and I knew there were some things he liked or didn't, but it was about spending the time, right, you spend the time with them and then obviously they know you, you love them.
Speaker 1:Yeah, my parents did the same thing, you know, for me. They, you know they allowed me to go out and whatnot, and I'm grateful for that. You know they, like you said earlier, they weren't the type of people that put me in a bubble and, you know, put me off to the side and said, no, he's not going to be able to do anything in this world. Yeah, yeah, definitely Going back to your son and being nonverbal. How do you communicate with him? What is that experience like?
Speaker 2:So the kind of default that we have in terms of that communication, you know, on the one hand, as parents, you know, it just kind of almost becomes that sixth sense of well, I know what he wants, kind of a thing, just because I've seen him ask for this a million times. I know his body language, I know what he's looking at, I know what he's kind of searching for, language, I know what he's looking at, I know what he's kind of searching for. You know, early on a lot of his therapists, especially ABA therapists, would teach him how to point at something that he wanted, a preferred item, which he will still do, and he knows some basic signing, like when he wants more of something, or, you know, to let you know what he's looking for. He does have a communication device. So he has an iPad that has the particular app we use is called Touch Chat. So it's just a communication app. I know there's a couple of different other ones out there and it just has. You know the app itself has just different windows and pictures kind of thing, and so you know it's essentially just like, you know, the Pax Picture Exchange. It's OK, what would you like to eat today? And you go to the page for restaurants. I want to eat here, I want to eat there, I would like fries, I would like a burger. Okay, so he will do that, I will tell you.
Speaker 2:That's challenging too, because there are times when he just gets bored of having to talk to you on there, and a lot of times either he'll just push any button just to make you satisfied or think he's satisfying you. But with some of his therapists, that can really get him to focus. The great thing is that not only can they get a lot of output out of him, but he can actually communicate. You know how he's feeling that day, or a little bit about you, know what he would like to do or what he liked about something. So we will get some of that. I know one therapist he's had that's really good will actually read like a simple chapter book to him and again, it's something definitely lower than his level, but it's something he can grasp. And he's able to actually answer questions through his communication device. He's able to spell out some basic responses. So that's awesome too.
Speaker 2:So it's and it's a challenge as a parent too, because, again, you're so used to just kind of assuming what your child wants or jumping in and saying okay, I know you're going for that, so let me help you, as opposed to challenging him more to say okay, use your words, tell me. You know, maybe not literally his words, but you know he can express himself in some different ways. So it's always a challenge as a parent to you know, maybe not literally his words, but you know he can express himself in some different ways. So it's always a challenge as a parent to you know, make sure that you're trying to pull that out of him. You know, but you know it is one of those things many times where it's like well, I just, I just know him and you know it also depends on your day, right? If it's, if it's maybe been a crazier day, okay, well, we're just going to fill in some of the gaps for you.
Speaker 1:But if you have more time and more space to do it. You know it's a great teaching opportunity. It's a great time to work with them on some of those skills. Sure, how did you go from being a teacher to being an advocate for people with disabilities?
Speaker 2:So my road from educator into advocate is a pretty interesting one. You know, as I kind of explained at the beginning of our conversation, I really started out just being another lost, confused parent, didn't really have a lot of resources, didn't have a lot of people to talk to, and I figured out that I needed community. You know, we didn't have a lot of friends who had kids with disabilities. We didn't really have a lot of people to lean into and especially as a guy, you know, although I had guy friends that you know maybe were married or had kids, they didn't understand what I was going through. And so it was kind of a journey for me that really started out, one to kind of develop community. So we had that support as a family and some of it started out very small. For example, I started a group, a support group for special needs dads right in our community right, we would meet at this restaurant every month and I started out with another guy in the area and took time to kind of get going. But we developed traction, we still meet and it's been going on for several years. So it was small things like that. But then I also had this I always had a desire to write. I always wanted to write and become a writer in some capacity, kind of as a passion of mine, and so the organization that I currently work for, which is Johnny and Friends one of the outreaches they had over the years that we would participate in is a family retreat, which is a week-long retreat for families of disability. There was a retreat center in Michigan. We still use it today.
Speaker 2:My son went for several years when I was married to his mom, and he's been back since with me. But at this retreat we'd meet all parents of disability from all over the Midwest basically. But there was a mom who I connected with, who did some writing, and I told her connected with who did some writing. And you know, I told her, you know I'm looking for some outlets, can you help me out? So she was writing for a very small disability ministry organization in Southeast Wisconsin and she said listen, we're always looking for more writers, more bloggers. Specifically, be great to have a dad, be great to have a guy. Why don't you try it? So I tried it and I wasn't sure about it at first because it wasn't something I had ever done before. I started doing it for about six months, really liked it.
Speaker 2:And then that organization got merged with a bigger national organization called Key Ministry, again also for disabilities. They're based out of Ohio but they have more of a national focus right and national outreach. So I got taken on as a writer by them and I continued to write and, you know, got a lot more exposure. They do a yearly conference I got to speak at. There were other organizations that asked me to speak at conferences as well, speaking to my experience as a parent. And then I started to do, you know certainly, a bunch of podcast interviews like this and actually contribute to to couple of friends' book projects as well. So I started kind of getting momentum again, really just wanting to look for just some vessel, some way to just kind of share my story and to just share what I had learned along the way, kind of a thing, and just kind of have a platform like that.
Speaker 2:And through all of that work again, I've been able to develop relationships with a lot of great advocates and people who are running, you know, nonprofits and ministries, all disability focused, all over the country. And again because of that, you know, and certainly in my current day job, which again Johnny and Friends is a global Christian disability ministry, but we do a variety of outreach locally, you know, and domestically as well. So in my role there again I'm able to really lean into the resources and the relationships I've developed to be able to help families, to equip them or get them the support they need. Or, you know, we get all kinds of random questions from families of ours at the office all the time and usually I'm the guy to answer them because I'm the one who kind of has a feel for all these things kind of all over. So it really started out as again a desire to build and just have community period and I got that.
Speaker 2:But then I got so much more because, you know, now I'm in a place where you know if I need to talk to someone. You know there are guys in my area I could certainly call and talk to for sure, but sometimes, depending on the question, it might be somebody out of state or on the other side of the country, and that's fine too. So that is a big difference as opposed to what I had before, which was feeling like I literally had no one, and that's a very dark, lonely place to be, especially when you have a child with a disability, and especially when your life and marriage goes through some pretty rocky places, like ours did. And so, as I really emphasize in terms of advice, you cannot do this without community. You must have support, you must have relationships. If you don't have them, find them. If you need help, I'm always happy to help anybody do that. But you can't do it alone, that's for sure.
Speaker 1:And just to give a little insight into Goni and Friends Goni Erickson-Toddler is the woman that started that ministry.
Speaker 2:Yes, she has an incredible story For those who don't know. She became a quadriplegic at the age of 17, all the way back in 1967. She had a diving accident. She actually grew up in Baltimore. During the summer she took a dive into Chesapeake Bay with shallow water. She bonked her head and she technically, she broke her neck. Now they were able to save her life, but again she became quite a pelagic instantly and so she's been a wheelchair user that whole time and she has really used her experience which, if anybody is interested in seeing her story and what that's all about, you can actually find the movie on YouTube where she actually plays herself. It's from the early 80s, I think. So, yeah, it's like a made-for-TV movie, but it's out there, it's free, you can watch it.
Speaker 2:But you know, in the early days she was struggling, she was frustrated, she was angry. You know this was not what she wanted for her life and you know this was not what she wanted for her life and you know, famously she would often remark about how she would have taken her own life. But when you have no use of your arms and legs it's hard to do that kind of thing. So her prayer became God, if you're not going to let me die, then teach me how to live. And so through that she developed all of these outlets. One was painting, which is remarkable and she still does this today. She learned how to paint with a brush in her mouth. She does wonderful just paintings of, you know, a lot of nature, scenery, animals, that type of thing. It's just incredible stuff. And then that got her on a national scale, on a national level in terms of awareness, people started to write her letters. Level in terms of awareness, people started to write her letters. And you know, she kind of developed this ministry just kind of around the kitchen table kind of thing, and got friends Johnny and friends to help her answer letters and, you know, communicate with people. And then over time the ministry grew, you know, over 40 years.
Speaker 2:So now we're in about 30 countries around the world. We're on, you know, five continents. We do a variety of outreach with families. Again, I mentioned retreats. We do marriage getaways for moms and dads. We do warrior getaways for veterans who are affected by disability. We have our Wheels for the World Ministry, which is a global wheelchair ministry where we deliver wheelchairs around the world. I actually just had the opportunity to come back from a trip we did to Chile and deliver wheelchairs there. So that was kind of cool. So it's a wonderful outreach. And, specifically, my job actually is that I train churches of any size and any denomination on how to welcome people with disabilities. I help them to develop programs, curriculum, Sunday school, whatever they're needing. I'm kind of the consultant that helps them with developing those things in their congregations, should they need them. So that's also a big part of our outreach and that's something that I love doing.
Speaker 1:we both know that the disability is not only a physical disability but it could also be, you know, inside as well and you know, affecting the brain and whatnot. So how do, like you just said, do, how should you know, welcome people with disabilities and what? What does that look like? Because I I've traveled around a lot and you know, giving my testimony at several churches and you know, for the most part I don't see and again, like I said, a lot of some of the disabilities are not only physical, but for the most part I don't see a lot of people with physical disabilities in the searches today.
Speaker 2:Yeah, and it's a very interesting thing because you know, when I talk, for example, when I train churches and you know I give them you know everyone likes numbers and stats because you know they want to understand what this all is identifies individuals with disabilities, that's all disabilities as the largest minority in the world right now, it's over 1 billion people, I think it's so, it's like it's over 1 billion, it's like one in five people around the world have a form of a disability, right, and that could be a physical disability, cognitive, both, you know, type of a thing. But the challenge is, is that right now you're dealing with, you know, first of all, certainly individuals that have physical disabilities, and that could be, let's say, someone who's a wheelchair user of any age, kind of a thing. Or certainly, as people get older, you know, and they, you know, have a need for more, let's say, assistance, let's say getting in and out of a building, type of a thing. But you know, then you get into again the cognitive disabilities where, again, like for example, in my son's case, if you saw him walking down the street, you probably wouldn't think there was anything different about him, and then, within about 10 seconds of trying to engage with him, you figure out, okay, well, there's something here.
Speaker 2:But even going beyond that, you know right now what we're seeing and certainly I think there's probably more a lens on it coming out of COVID and all of the you know, the ways we were restricted from interacting, you know, is the silent disabilities, like your depression, your anxiety, you know, and all of those things that you know cause people to really suffer on the inside again looking perfectly normal on the outside. And again, in some cases it could be a thing where, okay, you know, somebody with ADHD might have a little hard time focusing on a conversation, but if you have a person with severe depression, you know you could have someone who might really be on the inside screaming for help, but, you know, on the outside, look perfectly put together. So how do you even know what they're struggling with? And then, of course, how do you support them? So that's why, especially when I work with churches, you know, again, it's a matter of, yes, you want your building to be ADA, you know, compliant, and all of that. You want to make sure people can get in and out of the building and things like that. But you know, it's also just the heart you have, it's the awareness of okay, you don't know what someone has or their diagnosis or how they're going to present when they walk through the door. So you don't want to make assumptions Again, you want to go back to that idea of treating people like people, right, and then you know if you think about, on the one hand, you know the family, let's say with a child with autism, who you know, they really want a place to be able to attend a service on Sunday, but their child needs extra help or support or a buddy.
Speaker 2:Okay, there's that. But if you really are doing it well and again leaning back into that idea of community, where community is so needed and important, if you have a person, let's say, dealing with severe anxiety, depression or something along those lines, and they come into that congregation, they come into that community. Well, they may not just come right out and tell you oh, by the way, I suffer with severe depression. They're going to want to develop a relationship with someone or several people and maybe they get invited into a social group, small group of Bible study or you know whatever's going on in the life of the church, and then they develop enough of a comfortability to be able to share things on a more personal level. But if that acceptance isn't there from the minute someone walks in the door, and again you know I'm using the church example because that's my job.
Speaker 2:But in the same way, whether we're talking about any environment, workplace, school, whatever, just you go to a friend's house for a party and someone you've never met comes in the door, well, you have no idea of exactly, maybe, what's going on for them.
Speaker 2:So you always want to start out with treating people as people, not making assumptions and really just, you know, kind of allowing them the kind of safety, the emotional safety, to just feel at home, feel at peace. And as things are shared, as things come up, then you know if you feel you can support them, great. If not, ideally there is someone you know that can do that. But we have to. When we're thinking of disability, we have to get beyond this idea that it's just always that person in a wheelchair or that person where it's so obvious physically you know there could be someone truly suffering that looks like they're perfectly well put together. So again, don't make an assumption about that and while you want to respect their space, at the same time always be available and always be open and always be welcoming, because that really means so much, certainly to families like me with a child with a disability, or to, you know, I know a lot of people, I know if they are also, you know, struggling with things.
Speaker 1:As we get ready to wrap up here, one of the other questions I have was how has faith played a role in your life, along with your son's life, during this time, along with your son's life?
Speaker 2:during this time. So when I do give advice and I know I mentioned the community thing, which is a big piece of advice for me but usually when I give advice I give it in the form of number one little a and number one little b. So number one little a is my faith. I am nothing without my Christian faith. When my son was born I was not a believer. You know his mom. I was actually raised Catholic. My ex-wife was raised Jewish.
Speaker 2:We were kind of there's, I guess, a few different ways you can define it kind of secularly spiritual, new age spiritual. You know we certainly believed in God, but you know we weren't interested in belonging to a church, a temple or anything. And then, as things developed with my son's disability and of course things got more squeezed in the marriage and the family, we at least knew that we needed a community. But even then it really wasn't until we truly came to faith in Jesus that things really started to change. And I know for me that happened just attending a men's Bible study that a friend had referred me to, and my life was changed forever literally in one night. That doesn't mean that my son instantaneously got healed. It doesn't mean that the problems in my marriage just went away. And all of that, and certainly although my marriage was saved then, his mom and I did wind up getting divorced years later, and I do have the blessing of being remarried. So that's great.
Speaker 2:But the reality is that it's not that life automatically becomes better. It's just that you know that he's walking with you. He's walking with you, supporting you, he's guiding you, and I never felt alone after that. And so, even with all the ups and downs with my son's upbringing and raising him and all the decisions we've had to make even though things in my first marriage didn't necessarily work out the way I would have liked them to, even though there maybe are a lot of things I wish could have gone differently the reality is that he's always been with me. He has blessed me along the way.
Speaker 2:I have learned to appreciate not just what I have but the experiences I've had, because the reality is, even with disability, I can look at all of the incredible people I've met, all of the families, all the parents, all the friendships I never would have had if I didn't walk this path because of my child's disability, and that's the true blessing there. So I count it all as joy, as Scripture says, because at the end of the day there are things that I never would have had had I not walked this path. And that doesn't make it any easier. But knowing that you have that relationship with Christ, that does take certainly a big load off of your shoulders. Because then you realize at the end of the day, it's not about you, it's not about anything you're doing in your power. You can surrender it to him and all he has for you to do is be faithful and follow. And I've certainly tried to do that, you know, since then, for sure.
Speaker 1:And then, what is the? What does the future look like for your son?
Speaker 2:So right now he is at the school environment in Wichita, as I mentioned. That's going to be where he'll be for the foreseeable future, at least for maybe the next couple of years when he ages. Out of that, his mom and I have been having conversations about his living situation and also about what his life is going to be like. One of the things that parents who don't raise a child with a disability don't necessarily get is when you have a child who truly isn't going to be independent. It's not that you're coaching them up through their life to get them into college. So it's not that you're coaching them up through their life to get them into college. Okay, they're done with college. They graduated. Now they're going on to whatever life they're going to do, whatever job they're going to do, have a family, et cetera. In my son's case, he's not going to have any of that and we really need to create a life for him. We need to find the programs, we need to find things. He may or may not be able to ever hold a job. Quite honestly, we don't know what that will look like. So it's really a matter of us, you know, finding a good living situation for him that maybe provides a lot of those services. We have certainly looked at some now in the Chicago area. I will tell you that while there are many of them, knowing what I know, I can tell you that not all of them necessarily have the best care. And again, that's going back to my point about don't assume anything because it looks pretty on some level, because the reality is I have learned better from people that have told me. But there are some places that could be good choices for him. And again, one of the unique challenges is I would love for one of those places to be faith-based, to have a Christian environment. That may or may not be the case, you know, truthfully, I feel like I could surrender that if the care was good. But making sure that you know I'm engaging in the spiritual life of my son and making sure he's connected to church.
Speaker 2:But it even goes one more layer beyond that, because and this is what comes up especially when I work with churches is like in my son's case, and I always say this in these interviews we have a family of onlys, right? My son is an only child, I'm an only child, his mom's an only child, yes, there's the step-parents and some extended family, but the reality is that he has no siblings, and many times in families like ours, the siblings will be the ones to step in once mom and dad are gone. Well, in his case he won't have that. So at some point in his life, however long he lives, whatever age this will be, mom and dad just won't be here anymore. All of these people who have cared for him early on in his life are going to be gone on in his life are going to be gone.
Speaker 2:And so the question then becomes and not just for folks like my son, but for a lot of us who, you know, have kids, or, you know, if you have an individual with a disability who is going to live out their adult years without having a lot of that same family structure around who will be their community? Right, you know who are going to be the people that speak into their life, checking on them, wish them a happy birthday and Merry Christmas, give them a hug, right? You know, because of my son's challenges, he doesn't really have any intentional relationships that he's been able to develop because, you know, all of his friendships are just kind of default the kids he goes to school with or, you know goes to his programs with, he doesn't have anybody calling him up on the weekend to hang out, obviously, kind of thing. So you know, church is really something that can be a lifeline form to provide that community.
Speaker 2:And that's the other thing that I really impart to those churches when I work with them, to say, hey, listen, you know you can be blessing this family now, but also for years later and even far beyond, and you might not realize that there's a need here, but there is right. And in the same way, a church might step into the lives of someone who maybe, you know, didn't have any family, let's say for a holiday, or maybe was in hospice, or maybe was a shut-in for medical reasons or whatever it is. You know, in that same way churches need to also develop those strong relationships with the families and with the individuals so that later in life those things are available, that lifeline to community that is so needed. And so that's really the hope for me, for my son, is that we'll find him a great residential environment, something where he can be active and really be doing a lot of things out in the community, with support obviously, but also that he's going to have community intentionally built in around him as well.
Speaker 1:One last question I always ask is what encouragement can you give to my listeners?
Speaker 2:Well, the encouragement I would give is that, regardless of your situation and I also want to be clear because you know my son has a specific disability there are certainly folks that I know who have kids that have way more severe physical health, medical issues with their kids Not that my son hasn't, but you know, there are folks out there who I just look at them and I say I have no idea how they do it, but by the grace of God they are. You know, the encouragement I give is that, first of all, know that your child is always your child. Right, things might not look the way you thought they would. That's okay, still your child, and that child loves you and needs you. And's okay, still your child, and that child loves you and needs you and you know what you need that child too. So make sure that you're, first of all, not missing the opportunity to be a parent, to have those enjoyable days and moments with your child. Make sure that you're, you know, leaning into them as much as possible, but also have an awareness that you know again, you can't do this alone.
Speaker 2:If you are a person of faith, I strongly encourage you to lean in your faith. If you are lukewarm about it. I would say you know, maybe see if there is someone you want to talk to about that, or if there is a church, especially a church that supports disability, in your area. If you're not a religious or spiritual person, I understand that too. But even my advice there is you must have community, you must have people around you, you must have relationships with people who understand what you're walking through. So I would always encourage you to reach out to someone.
Speaker 2:If you don't know where to start, you can reach out to me Again. I'm always happy to help connect you or see how I can support you in a variety of ways. But ultimately, know that you are certainly not alone. There are lots of resources out there, but there are also a lot of people walking in your shoes that can be a help and a guide and sometimes just be a shoulder to cry on if you need that, and sometimes you need that too. But don't do it alone Absolutely not, you know. I would encourage. The biggest encouragement I would give you is to encourage you to not do it alone, to make sure that you're reaching out and developing those relationships, because they are so needed.
Speaker 1:And where can people connect with you?
Speaker 2:connect with you, sure, so I always give this little disclaimer as well, and I know we talked about this before we started the interview. But so if you go on to first of all, I have a website, johnfellacom it's just my namecom. I'm also on all of the social media platforms. I have a Facebook page, john's Special Needs Blog on Facebook. I'm on Instagram at John underscore, fellow underscore one. I'm on LinkedIn and Exxon under John fellow.
Speaker 2:But if you go into Google, you can also search under my old last name, fela Geller. And the reason why I have an old last name is because in my previous marriage I had a different last name and now I've switched back to my original one. So if you also just type in John Fellegeler, f-e-l-l-e-r, you will find a ton of stuff at Google as well. Unfortunately, my webmaster, who's a friend of mine, can't always get all the content up on the website, but usually on the social media all the stuff is there. But if you really want to see a big breakdown of a lot of my interviews and things and writing, definitely look under my old last name as well, fella Geller, and so you can search either way.
Speaker 1:Well, thank you, John Fella, for coming on the show today. We greatly appreciate having you Absolutely.
Speaker 2:Thanks so much, Dorsey.
Speaker 1:Absolutely Well. Guys and girls, thank you again for tuning in and listening. Please go and check out John's information and his website, and please like and share this episode. And check out my website at wwwdorseyrussellcom for previous episodes, or see rosshullcom for previous episodes, and I'll even share a link to a previous episode that connects to this episode. And until next time, god bless, bye-bye.
