October 12, 2025 • 31 mins
John Fela is an educator, author, and passionate advocate who calls himself the Swiss army knife of disability advocacy. As the father of a non-verbal son with autism, John brings a deeply personal and professional perspective to his work bridging faith-based and secular communities around disability awareness and inclusion. In this episode, John shares his journey from confusion and loss in the early days of his son's diagnosis to building a life of purpose, community, and ultimately, faith. He opens up about the heartbreaking decision to place his son in residential care, the power of finding genuine support systems, and what led him to Jesus during his darkest season.
John's conversation goes far beyond personal narrative. He challenges churches and faith communities to examine their theology around disability and move from mere inclusion to true acceptance and co-laboring. With only 1 in 10 churches in the United States offering any form of support for people with disabilities, John's insights about what families truly need, and how communities can provide it, are both convicting and hopeful. Whether you're a parent navigating disability, a church leader looking to expand your welcome, or simply someone wanting to understand this often-misunderstood community, this episode will shift your perspective and challenge you to see people, not just disabilities.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:08):
Wherever there are shadows, there are people ready to kick at the darkness until it bleeds daylight.
This is Bleeding Daylight with your host, Rodney Olsen.
Welcome and thanks for listening to Bleeding Daylight today.
You'll find hundreds more inspiring episodes at bleedingdaylight.net.
(00:28):
Please share this and other episodes with others.
Today we're dealing with a topic that is often misunderstood, pushed aside or even hidden in our society.
While statistics tell us that around 16% of people across the world live with a disability, there seems to be very low levels of knowledge around disabilities.
(00:51):
My guest today will help us towards a better understanding.
I'm absolutely thrilled to have today's guest join me.
John Fela calls himself the Swiss army knife of disability advocacy.
(01:11):
As the father of a non-verbal son with autism, John brings a deeply personal perspective to everything he does, whether that's his nearly two decades as an educator, his advocacy work with organisations like Johnny and Friends or his writing and speaking engagements.
His memoir, Faith Like My Father, gives an incredible window into his journey as a parent navigating the world of disability.
(01:38):
His dedication to building bridges between faith-based and secular advocacy communities is something that is desperately needed.
John, welcome to Bleeding Daylight.
Thanks so much for having me.
Can you tell me a little bit about your son, Christopher, and the journey that you've travelled with him over the years?
Definitely.
And what I would always start out by saying is, if it wasn't for my son's condition, there is probably no way that I would ever be on this journey.
(02:06):
My son's disability has literally shaped and directed everything that I have done in terms of being an advocate, but also doing things great and small in my own community and working with families that are close to me or wherever they are around the country.
I will tell you, in the early days, I was like most parents.
(02:27):
I was confused.
I was lost.
I had a lot of questions.
I realised pretty quickly how much I didn't have.
I definitely didn't have community, which is something that I always speak on quite a bit.
I didn't have direct support from people close to me.
I had friends, I had family, but they didn't really understand.
(02:48):
I realised what I was lacking in terms of having genuine support, and also the fact that I felt lost as a husband and as a father, meaning I really didn't know how to help my son, first of all, but also two, I didn't really know what my role was.
His mom, who I'm actually divorced from and
(03:08):
I'm now remarried, his mom has always been an excellent mom, but as most moms in these
situations, they tend to jump in and they kind of take over and direct the course of
a lot of things, which is fine, but I also felt that I was not only under-resourced in
terms of having people that I could even just talk to, I really didn't know what my role
(03:29):
even was in the family anymore.
Because of that, I went on a journey to find community, figure out what my needs were as a husband and a father and what I brought to the table in the relationship, but then also two, all of the incredible resources that I was able to not only connect with to make me a better parent for my own son, but then also to make sure that I could then give back to others in the way that I needed it.
(03:55):
Today, I live in the Chicago area.
My son lives in the middle of Kansas at a residential facility where he is finishing up his high school years.
He will eventually come home to a residential group home option and day program type of a situation.
He has mostly been successful in the public schools, but there is a reason why he is where he is because it was successful for a time and then stopped being a mat.
(04:20):
So, like many families in our position, we had to make a different choice.
Again, he is really my inspiration and motivation for all of this.
Of course, when we have an issue like this, I'm sure that there are mixed feelings.
As you say, Christopher is away at the moment living in a different place to you and that must be difficult to have to make that kind of decision, knowing that it's within his best interest.
(04:45):
But is there a sense in that of, oh, but really shouldn't I have him with me?
Because you don't have this list of, no, this is how it should work.
And so making decisions like that and truly working out what is best for Christopher, what is best for the family, it must be difficult at every turn.
Yes, this was not an easy choice.
(05:06):
And I will tell you what's actually interesting right now is his mom and I are kind of having this conversation back and forth about should he stay where he is until he can't be there anymore because they have an age limit so he can stay there several more years.
He's 17 now.
He can stay until he's 21.
Or should he come home when he's done with his last year of high school and then we'll kind of figure out his residential placement.
(05:30):
The decision to get him there wasn't easy, but I think it's one a lot of families can relate to because again, he grew up in a northern suburb of Chicago, a fairly affluent community, very good schools.
He had really mostly a good experience.
And then he had a year in high school where nothing was working.
He was having meltdowns and he was going after staff and he was being aggressive and being aggressive with mom and dad.
(05:54):
And it became a safety issue.
We were literally at the point where the school was calling us every day and saying, you need to come get your child.
That might be one thing when your child is little and maybe is having a cold or a fever.
It's quite another thing when your child is having these meltdowns every day.
And as a parent, you're kind of out of answers and you literally just can't quit your job or leave your job every day just to come pick him up.
(06:18):
It almost felt like the school had given up in some ways as well.
So we started to explore options.
That road led us to the place that he's currently at, which as is pretty typical with families like ours, you find something, something you've never heard of, whether it's a school or a therapy clinic or whatever, all of a sudden it's like, wow, everybody knows about this place.
(06:41):
And all of these people just come out of the woodwork and that place is great.
And they send people to train there all the time and all right.
The hardest part of this choice and the decision to get him there actually came the day we dropped him off.
I was there with his stepmom, my current wife, his mom and his mom's fiance.
(07:01):
We got his room set up and we met all the teachers and we met all the staff and everything.
And then at the end of the day, they said the natural transition is you leave at dinner time.
So in his group home, they had set up dinner and he had his spot and he had his meal.
Now my son, of course, again, he does have fairly severe autism.
He has communication issues and he has fine motor issues.
(07:23):
Normally I am assisting or someone is assisting him eating, depending on what it is.
And in the back of my head, I see him there.
I see him sitting.
He doesn't have anyone right there next to him.
And in my head, I'm thinking, who's going to feed him?
He's not going to eat because someone needs to feed him.
I need to feed him.
And then I had to do the self-talk in my brain that said, no, you need to leave.
(07:43):
It's time to go.
And that was probably the hardest thing was to just get me out that door.
Now, of course, they had staff there and he's fine and he's eating and all of that has worked out.
But as a parent, especially when you are used to that, regardless of how old your child is, that is such a hard place to find yourself in to really separate.
(08:04):
If he was typical, this would be like, yeah, whatever.
Just feed yourself, dude.
And I'll see you around.
As opposed to, you know what?
This is just what I'm used to.
And I don't know how to operate differently now.
So that is really where that interesting dynamic plays out.
And of course, you were mentioning how in those very early days when your son was first born and you start to realize this is going to be the journey from here on and you felt all at sea because you didn't know your place.
(08:34):
You didn't know how things were meant to be.
And you stepped into that advocacy space to be there for others.
But I'm sure that even having been in that advocacy space for some time and being able to work with others of disability, it would hit differently when it's your own son, wouldn't it?
And there's still those decisions.
(08:56):
As you say, you had the self-talk because you knew now was the right thing to do.
But in a sense, you're still his dad and you still wanted to step in.
How difficult is it to, I guess, remove yourself in those situations from being the advocate for others and actually just being the dad?
(09:16):
Yeah, that's a great question.
I really love using the word empathy because empathy comes up a lot in terms of what I do and everyone that I engage with, because as I stated in the beginning, I'm only doing this because my son was born with a disability.
Not that I would have a problem with people with disabilities or wouldn't be kind and respectful, but I wouldn't have embraced this world and this journey the same way.
(09:43):
This is a very cliche thing, but it is very true.
If you've met one person with a disability, you've met one.
And the same thing for a family, right?
And every family processes differently and deals with it differently.
So I think for me, what I had to learn was, okay, I realize that this is difficult for me, or maybe these are areas where I struggle as a parent.
(10:04):
And by developing this community and these relationships, okay, I'm going to meet people who might be having a similar experience, but you know what, they could be processing it totally differently.
There could be other parents or dads, let's say, who if I tell them that story, or if they were in my shoes in that situation, they might say, Hey, no problem.
(10:24):
I can walk out the door like no big deal.
That's not mine.
Now that doesn't make them a bad parent or a bad dad.
That just means that they're processing differently.
So for me, a lot of it also depends on who I'm engaging with.
What is their family situation?
What has been their experience?
Another thing that plays into it big is that there are a lot of families who have literally been hurt.
(10:45):
They've been hurt by schools who have rejected them or specifically their kids.
Especially in my previous work with Johnny and Friends, I worked a lot with churches and I still work with churches to help them develop programs and awareness and curriculums and things like that.
And there are a lot of families who have been rejected by the church, which doesn't sound like it would happen, but it does.
Even in society in general, every parent like me has a story of kids looking at your child weird on the playground or don't play with that kid because he's different or whatever it is.
(11:15):
In my son's case, I always start out a lot of my presentations just reminding people, my son has no friends.
He's involved in a lot of things, but he doesn't have someone calling him up on the weekend saying, Hey, you want to go out?
You want to hang out?
You want to go here?
And he might not ever, we'll see.
It's really goes back to that empathy piece to say, you know what?
I don't know your experience.
(11:36):
It's probably like mine.
We probably have enough similarities, but let me see where you're at.
Let me see it from your perspective.
Cause you know what, that may very well help me, but also too, it allows me more of a window to be able to relate to you.
And then if there is a place where there is support or any resources that can be given, then that certainly helps make that a lot easier.
(11:58):
You touched on something very significant there.
And that is that even there are churches who would reject a family where there is someone with a disability.
Now it might not be a, Hey, you don't belong here and push you out the door, but there are the signs I'm sure that people would receive that, Hey, we're not quite sure how to deal with this.
(12:19):
And so we just won't.
What is the most common experience for people who have children with disabilities in churches?
Is there a change or is it still very difficult to navigate that faith world when there are people with a disability?
There have been studies done.
One in 10 churches in the United States have some form of support for the disability community in their congregation.
(12:47):
And then of that one, okay, that is going to look differently than another church.
What I always remind people of in the churches, especially when I work with them, is that look, there is no one formula for this, it's going to look differently everywhere for a much larger church, which with much more resources, it's going to look one way.
(13:08):
It's going to look much differently for a smaller church with less resources, less people.
However, the biggest thing that I impress upon them, and again, regardless of the size of the denomination or anything is, are you welcoming these families in?
Because families like ours just want to know they're wanted.
Now, in my son's case, he's 17, he's attended five churches in his life.
(13:30):
Now, if you average that out, that's about a new church every three-ish years.
Now that's better than not having a church at all, but that also tells you that at some point they stopped working for him because they ran out of buddies or his buddies left or something happened and there was a change, it just couldn't support him anymore.
Any family of disability that just shows up to a church on a given Sunday, that church automatically, unless there is something already established and in place, which is not most churches, as I've said, then there is a little bit of a panic, a little bit of a, Oh no, what do we do with this?
(14:05):
We're not equipped for this.
We're not trained.
We don't know what to do.
What can we do?
And then of course, it also becomes an issue because if they are not prepared,
now, mind you, when I say prepared, yes, there are churches that have
established programs, but even if you don't have an established program, you
can still have a heart of welcome and opening to families like ours and say,
(14:26):
you know what, we're not sure, but we'll make it work, help us to
understand how we can support you.
And quite honestly, my family, we attended a church and we were there for five years just because they had that attitude, they didn't have anything formal, but they said, we'll figure it out.
And that was great.
The problem is so many churches say, well, we don't have the money.
We don't have the space.
(14:46):
We don't have the people.
So we, we can't mess with this and they are terrified.
And again, not all, but many.
They are terrified of a family with a child or a young adult, or even an adult with a disability coming into say a service time or into the auditorium or sanctuary, whatever you have and disturbing the service and disturbing the order and the structure of things.
(15:11):
Because for many churches, everything is very structured.
In churches where let's say a family maybe is not new and maybe they've been attending there for years and they happen to have a child that way.
You know, many times then it's a little bit easier for them to accommodate.
But more of the issue that I speak to is that there are so many families that don't have a church because they don't feel welcome.
(15:32):
If a family is looking for something and maybe they're new to the area, or maybe they're trying it for the first time, that initial interaction is really what's going to make or break the relationship.
Families like us, we already have a high anxiety meter and antenna.
We can tell right away if somebody's like, I don't know what to do with you guys.
As opposed to, you know what, we're glad you're here.
(15:54):
And you know what, just tell us how we can make it good.
How can we support?
And that goes such a long way.
Families like mine also too, we're not looking for it to be perfect.
We just want to be welcomed.
If a church can make that leap to have that level of acceptance, then we can have a conversation.
But for many, it's a conversation of, oh no, we don't have anything for you.
(16:18):
I don't think this is the place.
And a big mistake that a lot of churches make that's very hurtful also to families is we don't have something.
But why don't you go down the street to such and such church?
Because they've got a program for folks like you and your families.
Well, guess what?
Maybe I want to come here.
Maybe I have family that attends here.
(16:38):
Maybe my family grew up here.
Maybe we have friends here, whatever.
So you're literally going to say, yeah, we can't help you, but go down the street.
And that happens very frequently, quite honestly.
And on the one hand, that church might be thinking they're being kind, but the reality is they're communicating to us as a family, we just don't want you.
That's the leap that churches have to make to be able to have that trust and confidence, quite honestly, not have the fear of welcoming a family like us in and making a space, whatever that looks like.
(17:10):
Do you feel that sometimes that there is a difficulty for some people in their own theology?
If they have created a theology where I come to Christ and everything looks amazing after that, and we live this victorious life, and yet here is someone with a disability, so obviously this just doesn't seem to work with that.
(17:30):
Is there a point at which it actually causes people to wrestle with their own faith and realize, you know what, God never promised that there wouldn't be struggles, and yet that messes with their idea of what the gospel is, their idea of what theology is, their idea of who God is and his plan for us on this earth.
(17:50):
Yes, and to be perfectly honest, when I speak to a church, when I begin training a church that's looking to develop something, that is really the first place we go, and I literally speak to the church, the pastor, the leaders, whatever they have, I say, I'm happy to train volunteers or buddies or whatever you have for your Sunday and your service hours.
(18:15):
I want to start by talking to your leadership, because if this is really
going to work, your leaders need to embrace this and it needs to be in the
DNA of the church, in the theology of the church, because when we speak to the
theology of disability, I say, look, I might be coming in here, you might be
seeing me as the expert, but at the end of the day, I don't want you to be
(18:37):
concerned with what I say or think, or what some other expert says or thinks,
or the guy down the street, we want to know what God says.
What does God say about disability?
And you know what, we can go through scripture and there are plenty of scripture passages that really point to this, but, you know, let's just, for example, you use the case of when Paul speaks to all of the parts of the body having value, they are different, but needed.
(19:02):
And in the same way, in the body of Christ, people show up, they show up differently, whether they're typical or whether they identify with the disability or not, everyone is different.
Everyone has different skills and talents.
The real stretch for churches, it's one to get them to embrace the fact that, you know what, from the perspective of scripture, we have not been treating disability according to what the Bible says.
(19:32):
We have been blind to these folks.
And again, it's not just a, we didn't welcome someone into the church.
It's literally scripture is telling you, listen, there are so many examples of individuals with disabilities that God used, even Moses, who had a speech impediment and God said, I'll speak for you.
(19:52):
You don't worry about it.
We have to understand that churches need to experience this man in the mirror moment, as I sometimes like to say, and they need to be honest and say, what do we really think about this?
And have we been maybe not intentionally defiant of scripture, but maybe just ignorant of it, or maybe really just never looked at it genuinely.
(20:13):
So that's really the first place we have to go.
And then from there, the conversation becomes, okay, now that we understand that people with disabilities have value in the body of Christ, guess what?
They aren't just in need of being served.
They can serve also.
They have gifts and talents and things that they would like to do.
(20:36):
And churches that do this very well, they get to this place of what we call co-laboring, which is, you know what?
They would be great helping out in the cafe or they would be help straightening out the newsletters or the Bibles or something, they would be great helping out in the Sunday school room and they want to do that and they want to help.
That is identifying that they are equal like anyone else.
(20:58):
And not just that they have a place, but that they can be a vibrant part of the community as well.
And that is ultimately where we want to get a church to.
Having a program and having a setup is all great, but at the end of the day, are they literally part of your community?
And that is also the difference as I highlight with churches between inclusion and acceptance.
(21:21):
Everybody likes to use the word inclusion.
That's a fine word.
We like inclusion.
But inclusion says you have a place, but your place may still be separate from everyone else.
You're with us, but you're not really with all of us.
As opposed to acceptance, which says, you know what?
You can be in the auditorium or the sanctuary.
You can be helping out in the Sunday school room.
(21:44):
You can be engaging and interacting the same way everybody else does.
That's a huge leap for most churches.
And again, as I always say to them, that's your ultimate goal.
But we have to start out by seeing God's word for what it is.
Where are we based on how that is reflecting back to us?
Where do we need to go with that?
(22:05):
And maybe even a little bit, what do we even need to be repentant of?
And I can see in that when we do start seeing people with a disability actually involved in the church, actively involved, we then start to see the person rather than just the disability.
Because I'm sure that the first time you walk into a church with Christopher, what they're seeing is not Christopher at all, but they're seeing some kid with autism who's nonverbal, they're seeing that disability as something to be dealt with rather than a person to be involved in the church.
(22:43):
How important is it for us to start to make that distinction between the disability that someone may have and the person that God has created?
That is everything that we're talking about right there.
Something that I use when I train churches and something that Johnny and Francis' ministry uses and a lot of other disability ministries use, and that's a tool called the five stages.
(23:06):
It's called the five stages of church culture change.
And I actually know the gentleman that created it here in the Chicago area.
It's a model that takes churches or individuals as well, because it can apply to a church body or it can apply to an individual, and it takes you through a five-step process.
What you see is that most people in most churches start out from a place of, one way to describe it as ignorance, meaning I don't know what I don't know.
(23:30):
Disability is not in my space, so I don't even think about it.
And then all of a sudden, one day someone like my son shows up and okay, now what?
And then you move to a place of evaluation, let's say, and starting to think about, okay, so what do we actually need to do here?
What is really required?
You're still probably coming from a place of, we need to do something because we want the family to be here, but we're still not sure.
(23:54):
And you still may have questions.
And quite honestly, you may still have preconceived notions about who someone is or what someone can do or not.
And then you kind of move into the middle ground, which we'd normally call like the care stage.
And care says, yes, we want you here.
That's the inclusion part.
And you are someone that we need to care for.
(24:16):
So they see value as a creation of God and as a child of God, but are they necessarily seeing you as a whole person yet?
Not really.
And that's when we have to move further on those stages to friendship, which means, you know what, you're not just someone that I have to care for.
(24:36):
You're someone I care about and we have a relationship.
In the churches that we belong to, the person, and sometimes it was a guy, sometimes it was a girl, who was my son's buddy, they looked forward to seeing him.
They had a relationship.
They had a friendship.
They'd ask questions.
It wasn't just, okay, well, I'm babysitting for an hour.
(24:56):
Just plop them right down.
Because at the end of the day, we could define care as babysitting too.
And there are some churches, unfortunately, where that's what it amounts to.
As I also tell churches when I train them, your goal is to give everybody you serve the gospel.
You might have to get creative with how you do that, but that's your goal.
This is church.
(25:18):
They're here because they want their child to have a spiritual experience and be exposed to the gospel.
And then that's of course where we move to that last stage of co-laboring, as I mentioned, because then we are truly seeing the value of a person and saying, you know what, this person matters to this church, matters to this community.
We want to make sure that they're part of whatever we're doing on Sunday.
(25:42):
They're part of the service.
They're part of the lesson.
They're getting a Bible lesson or having a discussion or hearing the gospel in whatever way that is.
But then how is that person, how are we seeing the value in that person to say, you know what, they can help too.
Perfect example for my son, the last church he attended before he did his move.
Since COVID, most churches are doing communion in these little disposable cups.
(26:04):
The disability ministry, some random Sundays, they would be passing them out to people.
And that's awesome because you know what?
That's something my son can do.
There are a lot of things that other people in the disability ministry could maybe do that he can't, but he could do that.
And that was valuable because that was also him being a part of the community.
And I stress this to churches all the time too, don't let your disability ministry just be something that gets locked away in a room somewhere.
(26:33):
You've written down some of your experiences in your memoir, which is titled Faith Like My Father.
Tell me a little bit about that.
That is my memoir of my journey as a special needs dad, but I don't want to spoil the book because I do want you to pick it up and read it, but the reality is, is my father was not a Christian man.
(26:54):
I was actually raised Catholic and nothing against Catholics or anything, but he was not a guy who went to church.
It was not a guy who read the Bible.
He was not a guy who prayed regularly.
He would engage when he needed to, but he gave me one great piece of advice and I never realized it until later on in life.
Now my journey than a nutshell as a Christian is again, I was raised Catholic.
(27:16):
I spent many years away from the church.
I never didn't believe in God, but the Catholic church just didn't resonate with me anymore.
So I kind of went on a spiritual journey.
I explored all of these different things, new age philosophy, Eastern stuff, meditation, you name it.
My ex-wife that I eventually met was actually raised Jewish, similar experience, didn't connect with it.
(27:38):
So we kind of, we're just doing our own thing.
We said, we're not religious.
We don't want to belong to anything.
Our marriage, our family structure, our personal lives are just being ripped apart, not because it's anything he is directly doing, but when you have disability in the family, it exacerbates all of these issues and we did not have a faith foundation.
(27:59):
You realize very quickly your marriage is actually not on solid ground.
It was because of my son's disability that I also came to faith.
And so when I speak of my advocacy work, my son's disability actually blessed me in so many ways, because it allowed me to do the work that I do.
It allowed me to engage with all these wonderful people and organizations, make all these wonderful friendships.
(28:19):
But most importantly, it led me to Jesus.
If it wasn't for his disability, I would not be a person of faith.
And you know what?
I probably wouldn't be here because in my worst season and in our worst season, right before I got saved, I was quite honestly suicidal.
Jesus showed up and again, it didn't mean all my problems were fixed overnight.
(28:40):
Life got better gradually.
What I found was the value in just having the relationship with him.
The rest of the things going on in life, they still mattered, but that relationship with him proved to be so valuable.
It gave me a sense of peace, safety, and trust that I didn't have before he showed up.
(29:01):
I did eventually though winding up getting divorced, not by choice.
I literally got papers handed to me one day and my ex-wife, my son's mom said, I just don't love you anymore.
And here you go.
So I went from the experience of almost losing everything, getting saved, getting my life and family back on track for several years, and then only to discover that there was another pitfall at the end.
(29:24):
That of course was not the end.
And luckily I had built and developed so much community and relationships and people in my life that I had a great support structure moving through that.
But then of course I needed to learn how to parent as a single dad so I can speak to that too.
And then eventually I met my new wife, who was an incredible woman, a very strong believer and loves disability and loves my son.
(29:48):
But here's the thing, that advice my father gave me all those years ago, that I threw away because I felt it really didn't matter that much.
As I got older and I saw other guys with their dads or those types of relationships, I thought my dad didn't give me anything.
The reality is, is that looking back on all of it, he gave me the best advice in the world.
(30:09):
I just didn't realize it.
It was that powerful.
And so that's why it's called Faith Like My Father.
Not because my father was necessarily a man of faith, but the advice he gave me proved to be utterly biblical and scriptural.
And when I finally realized it, it just blew my mind.
If you're a parent of disability, it'll resonate with you.
(30:31):
If you're a person of faith and you don't have a disability in your life, it'll resonate with you.
And especially if you're a person of faith with disability, hopefully it will really resonate with you as well.
John, I have links for people to connect with you to your website so they can find your memoir as well in the show notes at bleedingdaylight.net.
I want to thank you for enlightening us, for helping us to understand a little bit of your world today, to understand the disability space, to start to see people with a disability as people, not just as their disability, and the place of those with a disability in our churches.
(31:09):
So thank you for that.
And thank you for spending time with us today on Bleeding Daylight.
Absolutely.
Thanks so much.
Thank you for listening to Bleeding Daylight.
Please help us to shine more light into the darkness by sharing this episode with others.
For further details and more episodes, please visit bleedingdaylight.net.
Wherever there are shadows, there are people ready to kick at the darkness until it bleeds daylight.
This is Bleeding Daylight with your host, Rodney Olsen.
Welcome and thanks for listening to Bleeding Daylight today.
You'll find hundreds more inspiring episodes at bleedingdaylight.net.
(00:28):
Please share this and other episodes with others.
Today we're dealing with a topic that is often misunderstood, pushed aside or even hidden in our society.
While statistics tell us that around 16% of people across the world live with a disability, there seems to be very low levels of knowledge around disabilities.
(00:51):
My guest today will help us towards a better understanding.
I'm absolutely thrilled to have today's guest join me.
John Fela calls himself the Swiss army knife of disability advocacy.
(01:11):
As the father of a non-verbal son with autism, John brings a deeply personal perspective to everything he does, whether that's his nearly two decades as an educator, his advocacy work with organisations like Johnny and Friends or his writing and speaking engagements.
His memoir, Faith Like My Father, gives an incredible window into his journey as a parent navigating the world of disability.
(01:38):
His dedication to building bridges between faith-based and secular advocacy communities is something that is desperately needed.
John, welcome to Bleeding Daylight.
Thanks so much for having me.
Can you tell me a little bit about your son, Christopher, and the journey that you've travelled with him over the years?
Definitely.
And what I would always start out by saying is, if it wasn't for my son's condition, there is probably no way that I would ever be on this journey.
(02:06):
My son's disability has literally shaped and directed everything that I have done in terms of being an advocate, but also doing things great and small in my own community and working with families that are close to me or wherever they are around the country.
I will tell you, in the early days, I was like most parents.
(02:27):
I was confused.
I was lost.
I had a lot of questions.
I realised pretty quickly how much I didn't have.
I definitely didn't have community, which is something that I always speak on quite a bit.
I didn't have direct support from people close to me.
I had friends, I had family, but they didn't really understand.
(02:48):
I realised what I was lacking in terms of having genuine support, and also the fact that I felt lost as a husband and as a father, meaning I really didn't know how to help my son, first of all, but also two, I didn't really know what my role was.
His mom, who I'm actually divorced from and
(03:08):
I'm now remarried, his mom has always been an excellent mom, but as most moms in these
situations, they tend to jump in and they kind of take over and direct the course of
a lot of things, which is fine, but I also felt that I was not only under-resourced in
terms of having people that I could even just talk to, I really didn't know what my role
(03:29):
even was in the family anymore.
Because of that, I went on a journey to find community, figure out what my needs were as a husband and a father and what I brought to the table in the relationship, but then also two, all of the incredible resources that I was able to not only connect with to make me a better parent for my own son, but then also to make sure that I could then give back to others in the way that I needed it.
(03:55):
Today, I live in the Chicago area.
My son lives in the middle of Kansas at a residential facility where he is finishing up his high school years.
He will eventually come home to a residential group home option and day program type of a situation.
He has mostly been successful in the public schools, but there is a reason why he is where he is because it was successful for a time and then stopped being a mat.
(04:20):
So, like many families in our position, we had to make a different choice.
Again, he is really my inspiration and motivation for all of this.
Of course, when we have an issue like this, I'm sure that there are mixed feelings.
As you say, Christopher is away at the moment living in a different place to you and that must be difficult to have to make that kind of decision, knowing that it's within his best interest.
(04:45):
But is there a sense in that of, oh, but really shouldn't I have him with me?
Because you don't have this list of, no, this is how it should work.
And so making decisions like that and truly working out what is best for Christopher, what is best for the family, it must be difficult at every turn.
Yes, this was not an easy choice.
(05:06):
And I will tell you what's actually interesting right now is his mom and I are kind of having this conversation back and forth about should he stay where he is until he can't be there anymore because they have an age limit so he can stay there several more years.
He's 17 now.
He can stay until he's 21.
Or should he come home when he's done with his last year of high school and then we'll kind of figure out his residential placement.
(05:30):
The decision to get him there wasn't easy, but I think it's one a lot of families can relate to because again, he grew up in a northern suburb of Chicago, a fairly affluent community, very good schools.
He had really mostly a good experience.
And then he had a year in high school where nothing was working.
He was having meltdowns and he was going after staff and he was being aggressive and being aggressive with mom and dad.
(05:54):
And it became a safety issue.
We were literally at the point where the school was calling us every day and saying, you need to come get your child.
That might be one thing when your child is little and maybe is having a cold or a fever.
It's quite another thing when your child is having these meltdowns every day.
And as a parent, you're kind of out of answers and you literally just can't quit your job or leave your job every day just to come pick him up.
(06:18):
It almost felt like the school had given up in some ways as well.
So we started to explore options.
That road led us to the place that he's currently at, which as is pretty typical with families like ours, you find something, something you've never heard of, whether it's a school or a therapy clinic or whatever, all of a sudden it's like, wow, everybody knows about this place.
(06:41):
And all of these people just come out of the woodwork and that place is great.
And they send people to train there all the time and all right.
The hardest part of this choice and the decision to get him there actually came the day we dropped him off.
I was there with his stepmom, my current wife, his mom and his mom's fiance.
(07:01):
We got his room set up and we met all the teachers and we met all the staff and everything.
And then at the end of the day, they said the natural transition is you leave at dinner time.
So in his group home, they had set up dinner and he had his spot and he had his meal.
Now my son, of course, again, he does have fairly severe autism.
He has communication issues and he has fine motor issues.
(07:23):
Normally I am assisting or someone is assisting him eating, depending on what it is.
And in the back of my head, I see him there.
I see him sitting.
He doesn't have anyone right there next to him.
And in my head, I'm thinking, who's going to feed him?
He's not going to eat because someone needs to feed him.
I need to feed him.
And then I had to do the self-talk in my brain that said, no, you need to leave.
(07:43):
It's time to go.
And that was probably the hardest thing was to just get me out that door.
Now, of course, they had staff there and he's fine and he's eating and all of that has worked out.
But as a parent, especially when you are used to that, regardless of how old your child is, that is such a hard place to find yourself in to really separate.
(08:04):
If he was typical, this would be like, yeah, whatever.
Just feed yourself, dude.
And I'll see you around.
As opposed to, you know what?
This is just what I'm used to.
And I don't know how to operate differently now.
So that is really where that interesting dynamic plays out.
And of course, you were mentioning how in those very early days when your son was first born and you start to realize this is going to be the journey from here on and you felt all at sea because you didn't know your place.
(08:34):
You didn't know how things were meant to be.
And you stepped into that advocacy space to be there for others.
But I'm sure that even having been in that advocacy space for some time and being able to work with others of disability, it would hit differently when it's your own son, wouldn't it?
And there's still those decisions.
(08:56):
As you say, you had the self-talk because you knew now was the right thing to do.
But in a sense, you're still his dad and you still wanted to step in.
How difficult is it to, I guess, remove yourself in those situations from being the advocate for others and actually just being the dad?
(09:16):
Yeah, that's a great question.
I really love using the word empathy because empathy comes up a lot in terms of what I do and everyone that I engage with, because as I stated in the beginning, I'm only doing this because my son was born with a disability.
Not that I would have a problem with people with disabilities or wouldn't be kind and respectful, but I wouldn't have embraced this world and this journey the same way.
(09:43):
This is a very cliche thing, but it is very true.
If you've met one person with a disability, you've met one.
And the same thing for a family, right?
And every family processes differently and deals with it differently.
So I think for me, what I had to learn was, okay, I realize that this is difficult for me, or maybe these are areas where I struggle as a parent.
(10:04):
And by developing this community and these relationships, okay, I'm going to meet people who might be having a similar experience, but you know what, they could be processing it totally differently.
There could be other parents or dads, let's say, who if I tell them that story, or if they were in my shoes in that situation, they might say, Hey, no problem.
(10:24):
I can walk out the door like no big deal.
That's not mine.
Now that doesn't make them a bad parent or a bad dad.
That just means that they're processing differently.
So for me, a lot of it also depends on who I'm engaging with.
What is their family situation?
What has been their experience?
Another thing that plays into it big is that there are a lot of families who have literally been hurt.
(10:45):
They've been hurt by schools who have rejected them or specifically their kids.
Especially in my previous work with Johnny and Friends, I worked a lot with churches and I still work with churches to help them develop programs and awareness and curriculums and things like that.
And there are a lot of families who have been rejected by the church, which doesn't sound like it would happen, but it does.
Even in society in general, every parent like me has a story of kids looking at your child weird on the playground or don't play with that kid because he's different or whatever it is.
(11:15):
In my son's case, I always start out a lot of my presentations just reminding people, my son has no friends.
He's involved in a lot of things, but he doesn't have someone calling him up on the weekend saying, Hey, you want to go out?
You want to hang out?
You want to go here?
And he might not ever, we'll see.
It's really goes back to that empathy piece to say, you know what?
I don't know your experience.
(11:36):
It's probably like mine.
We probably have enough similarities, but let me see where you're at.
Let me see it from your perspective.
Cause you know what, that may very well help me, but also too, it allows me more of a window to be able to relate to you.
And then if there is a place where there is support or any resources that can be given, then that certainly helps make that a lot easier.
(11:58):
You touched on something very significant there.
And that is that even there are churches who would reject a family where there is someone with a disability.
Now it might not be a, Hey, you don't belong here and push you out the door, but there are the signs I'm sure that people would receive that, Hey, we're not quite sure how to deal with this.
(12:19):
And so we just won't.
What is the most common experience for people who have children with disabilities in churches?
Is there a change or is it still very difficult to navigate that faith world when there are people with a disability?
There have been studies done.
One in 10 churches in the United States have some form of support for the disability community in their congregation.
(12:47):
And then of that one, okay, that is going to look differently than another church.
What I always remind people of in the churches, especially when I work with them, is that look, there is no one formula for this, it's going to look differently everywhere for a much larger church, which with much more resources, it's going to look one way.
(13:08):
It's going to look much differently for a smaller church with less resources, less people.
However, the biggest thing that I impress upon them, and again, regardless of the size of the denomination or anything is, are you welcoming these families in?
Because families like ours just want to know they're wanted.
Now, in my son's case, he's 17, he's attended five churches in his life.
(13:30):
Now, if you average that out, that's about a new church every three-ish years.
Now that's better than not having a church at all, but that also tells you that at some point they stopped working for him because they ran out of buddies or his buddies left or something happened and there was a change, it just couldn't support him anymore.
Any family of disability that just shows up to a church on a given Sunday, that church automatically, unless there is something already established and in place, which is not most churches, as I've said, then there is a little bit of a panic, a little bit of a, Oh no, what do we do with this?
(14:05):
We're not equipped for this.
We're not trained.
We don't know what to do.
What can we do?
And then of course, it also becomes an issue because if they are not prepared,
now, mind you, when I say prepared, yes, there are churches that have
established programs, but even if you don't have an established program, you
can still have a heart of welcome and opening to families like ours and say,
(14:26):
you know what, we're not sure, but we'll make it work, help us to
understand how we can support you.
And quite honestly, my family, we attended a church and we were there for five years just because they had that attitude, they didn't have anything formal, but they said, we'll figure it out.
And that was great.
The problem is so many churches say, well, we don't have the money.
We don't have the space.
(14:46):
We don't have the people.
So we, we can't mess with this and they are terrified.
And again, not all, but many.
They are terrified of a family with a child or a young adult, or even an adult with a disability coming into say a service time or into the auditorium or sanctuary, whatever you have and disturbing the service and disturbing the order and the structure of things.
(15:11):
Because for many churches, everything is very structured.
In churches where let's say a family maybe is not new and maybe they've been attending there for years and they happen to have a child that way.
You know, many times then it's a little bit easier for them to accommodate.
But more of the issue that I speak to is that there are so many families that don't have a church because they don't feel welcome.
(15:32):
If a family is looking for something and maybe they're new to the area, or maybe they're trying it for the first time, that initial interaction is really what's going to make or break the relationship.
Families like us, we already have a high anxiety meter and antenna.
We can tell right away if somebody's like, I don't know what to do with you guys.
As opposed to, you know what, we're glad you're here.
(15:54):
And you know what, just tell us how we can make it good.
How can we support?
And that goes such a long way.
Families like mine also too, we're not looking for it to be perfect.
We just want to be welcomed.
If a church can make that leap to have that level of acceptance, then we can have a conversation.
But for many, it's a conversation of, oh no, we don't have anything for you.
(16:18):
I don't think this is the place.
And a big mistake that a lot of churches make that's very hurtful also to families is we don't have something.
But why don't you go down the street to such and such church?
Because they've got a program for folks like you and your families.
Well, guess what?
Maybe I want to come here.
Maybe I have family that attends here.
(16:38):
Maybe my family grew up here.
Maybe we have friends here, whatever.
So you're literally going to say, yeah, we can't help you, but go down the street.
And that happens very frequently, quite honestly.
And on the one hand, that church might be thinking they're being kind, but the reality is they're communicating to us as a family, we just don't want you.
That's the leap that churches have to make to be able to have that trust and confidence, quite honestly, not have the fear of welcoming a family like us in and making a space, whatever that looks like.
(17:10):
Do you feel that sometimes that there is a difficulty for some people in their own theology?
If they have created a theology where I come to Christ and everything looks amazing after that, and we live this victorious life, and yet here is someone with a disability, so obviously this just doesn't seem to work with that.
(17:30):
Is there a point at which it actually causes people to wrestle with their own faith and realize, you know what, God never promised that there wouldn't be struggles, and yet that messes with their idea of what the gospel is, their idea of what theology is, their idea of who God is and his plan for us on this earth.
(17:50):
Yes, and to be perfectly honest, when I speak to a church, when I begin training a church that's looking to develop something, that is really the first place we go, and I literally speak to the church, the pastor, the leaders, whatever they have, I say, I'm happy to train volunteers or buddies or whatever you have for your Sunday and your service hours.
(18:15):
I want to start by talking to your leadership, because if this is really
going to work, your leaders need to embrace this and it needs to be in the
DNA of the church, in the theology of the church, because when we speak to the
theology of disability, I say, look, I might be coming in here, you might be
seeing me as the expert, but at the end of the day, I don't want you to be
(18:37):
concerned with what I say or think, or what some other expert says or thinks,
or the guy down the street, we want to know what God says.
What does God say about disability?
And you know what, we can go through scripture and there are plenty of scripture passages that really point to this, but, you know, let's just, for example, you use the case of when Paul speaks to all of the parts of the body having value, they are different, but needed.
(19:02):
And in the same way, in the body of Christ, people show up, they show up differently, whether they're typical or whether they identify with the disability or not, everyone is different.
Everyone has different skills and talents.
The real stretch for churches, it's one to get them to embrace the fact that, you know what, from the perspective of scripture, we have not been treating disability according to what the Bible says.
(19:32):
We have been blind to these folks.
And again, it's not just a, we didn't welcome someone into the church.
It's literally scripture is telling you, listen, there are so many examples of individuals with disabilities that God used, even Moses, who had a speech impediment and God said, I'll speak for you.
(19:52):
You don't worry about it.
We have to understand that churches need to experience this man in the mirror moment, as I sometimes like to say, and they need to be honest and say, what do we really think about this?
And have we been maybe not intentionally defiant of scripture, but maybe just ignorant of it, or maybe really just never looked at it genuinely.
(20:13):
So that's really the first place we have to go.
And then from there, the conversation becomes, okay, now that we understand that people with disabilities have value in the body of Christ, guess what?
They aren't just in need of being served.
They can serve also.
They have gifts and talents and things that they would like to do.
(20:36):
And churches that do this very well, they get to this place of what we call co-laboring, which is, you know what?
They would be great helping out in the cafe or they would be help straightening out the newsletters or the Bibles or something, they would be great helping out in the Sunday school room and they want to do that and they want to help.
That is identifying that they are equal like anyone else.
(20:58):
And not just that they have a place, but that they can be a vibrant part of the community as well.
And that is ultimately where we want to get a church to.
Having a program and having a setup is all great, but at the end of the day, are they literally part of your community?
And that is also the difference as I highlight with churches between inclusion and acceptance.
(21:21):
Everybody likes to use the word inclusion.
That's a fine word.
We like inclusion.
But inclusion says you have a place, but your place may still be separate from everyone else.
You're with us, but you're not really with all of us.
As opposed to acceptance, which says, you know what?
You can be in the auditorium or the sanctuary.
You can be helping out in the Sunday school room.
(21:44):
You can be engaging and interacting the same way everybody else does.
That's a huge leap for most churches.
And again, as I always say to them, that's your ultimate goal.
But we have to start out by seeing God's word for what it is.
Where are we based on how that is reflecting back to us?
Where do we need to go with that?
(22:05):
And maybe even a little bit, what do we even need to be repentant of?
And I can see in that when we do start seeing people with a disability actually involved in the church, actively involved, we then start to see the person rather than just the disability.
Because I'm sure that the first time you walk into a church with Christopher, what they're seeing is not Christopher at all, but they're seeing some kid with autism who's nonverbal, they're seeing that disability as something to be dealt with rather than a person to be involved in the church.
(22:43):
How important is it for us to start to make that distinction between the disability that someone may have and the person that God has created?
That is everything that we're talking about right there.
Something that I use when I train churches and something that Johnny and Francis' ministry uses and a lot of other disability ministries use, and that's a tool called the five stages.
(23:06):
It's called the five stages of church culture change.
And I actually know the gentleman that created it here in the Chicago area.
It's a model that takes churches or individuals as well, because it can apply to a church body or it can apply to an individual, and it takes you through a five-step process.
What you see is that most people in most churches start out from a place of, one way to describe it as ignorance, meaning I don't know what I don't know.
(23:30):
Disability is not in my space, so I don't even think about it.
And then all of a sudden, one day someone like my son shows up and okay, now what?
And then you move to a place of evaluation, let's say, and starting to think about, okay, so what do we actually need to do here?
What is really required?
You're still probably coming from a place of, we need to do something because we want the family to be here, but we're still not sure.
(23:54):
And you still may have questions.
And quite honestly, you may still have preconceived notions about who someone is or what someone can do or not.
And then you kind of move into the middle ground, which we'd normally call like the care stage.
And care says, yes, we want you here.
That's the inclusion part.
And you are someone that we need to care for.
(24:16):
So they see value as a creation of God and as a child of God, but are they necessarily seeing you as a whole person yet?
Not really.
And that's when we have to move further on those stages to friendship, which means, you know what, you're not just someone that I have to care for.
(24:36):
You're someone I care about and we have a relationship.
In the churches that we belong to, the person, and sometimes it was a guy, sometimes it was a girl, who was my son's buddy, they looked forward to seeing him.
They had a relationship.
They had a friendship.
They'd ask questions.
It wasn't just, okay, well, I'm babysitting for an hour.
(24:56):
Just plop them right down.
Because at the end of the day, we could define care as babysitting too.
And there are some churches, unfortunately, where that's what it amounts to.
As I also tell churches when I train them, your goal is to give everybody you serve the gospel.
You might have to get creative with how you do that, but that's your goal.
This is church.
(25:18):
They're here because they want their child to have a spiritual experience and be exposed to the gospel.
And then that's of course where we move to that last stage of co-laboring, as I mentioned, because then we are truly seeing the value of a person and saying, you know what, this person matters to this church, matters to this community.
We want to make sure that they're part of whatever we're doing on Sunday.
(25:42):
They're part of the service.
They're part of the lesson.
They're getting a Bible lesson or having a discussion or hearing the gospel in whatever way that is.
But then how is that person, how are we seeing the value in that person to say, you know what, they can help too.
Perfect example for my son, the last church he attended before he did his move.
Since COVID, most churches are doing communion in these little disposable cups.
(26:04):
The disability ministry, some random Sundays, they would be passing them out to people.
And that's awesome because you know what?
That's something my son can do.
There are a lot of things that other people in the disability ministry could maybe do that he can't, but he could do that.
And that was valuable because that was also him being a part of the community.
And I stress this to churches all the time too, don't let your disability ministry just be something that gets locked away in a room somewhere.
(26:33):
You've written down some of your experiences in your memoir, which is titled Faith Like My Father.
Tell me a little bit about that.
That is my memoir of my journey as a special needs dad, but I don't want to spoil the book because I do want you to pick it up and read it, but the reality is, is my father was not a Christian man.
(26:54):
I was actually raised Catholic and nothing against Catholics or anything, but he was not a guy who went to church.
It was not a guy who read the Bible.
He was not a guy who prayed regularly.
He would engage when he needed to, but he gave me one great piece of advice and I never realized it until later on in life.
Now my journey than a nutshell as a Christian is again, I was raised Catholic.
(27:16):
I spent many years away from the church.
I never didn't believe in God, but the Catholic church just didn't resonate with me anymore.
So I kind of went on a spiritual journey.
I explored all of these different things, new age philosophy, Eastern stuff, meditation, you name it.
My ex-wife that I eventually met was actually raised Jewish, similar experience, didn't connect with it.
(27:38):
So we kind of, we're just doing our own thing.
We said, we're not religious.
We don't want to belong to anything.
Our marriage, our family structure, our personal lives are just being ripped apart, not because it's anything he is directly doing, but when you have disability in the family, it exacerbates all of these issues and we did not have a faith foundation.
(27:59):
You realize very quickly your marriage is actually not on solid ground.
It was because of my son's disability that I also came to faith.
And so when I speak of my advocacy work, my son's disability actually blessed me in so many ways, because it allowed me to do the work that I do.
It allowed me to engage with all these wonderful people and organizations, make all these wonderful friendships.
(28:19):
But most importantly, it led me to Jesus.
If it wasn't for his disability, I would not be a person of faith.
And you know what?
I probably wouldn't be here because in my worst season and in our worst season, right before I got saved, I was quite honestly suicidal.
Jesus showed up and again, it didn't mean all my problems were fixed overnight.
(28:40):
Life got better gradually.
What I found was the value in just having the relationship with him.
The rest of the things going on in life, they still mattered, but that relationship with him proved to be so valuable.
It gave me a sense of peace, safety, and trust that I didn't have before he showed up.
(29:01):
I did eventually though winding up getting divorced, not by choice.
I literally got papers handed to me one day and my ex-wife, my son's mom said, I just don't love you anymore.
And here you go.
So I went from the experience of almost losing everything, getting saved, getting my life and family back on track for several years, and then only to discover that there was another pitfall at the end.
(29:24):
That of course was not the end.
And luckily I had built and developed so much community and relationships and people in my life that I had a great support structure moving through that.
But then of course I needed to learn how to parent as a single dad so I can speak to that too.
And then eventually I met my new wife, who was an incredible woman, a very strong believer and loves disability and loves my son.
(29:48):
But here's the thing, that advice my father gave me all those years ago, that I threw away because I felt it really didn't matter that much.
As I got older and I saw other guys with their dads or those types of relationships, I thought my dad didn't give me anything.
The reality is, is that looking back on all of it, he gave me the best advice in the world.
(30:09):
I just didn't realize it.
It was that powerful.
And so that's why it's called Faith Like My Father.
Not because my father was necessarily a man of faith, but the advice he gave me proved to be utterly biblical and scriptural.
And when I finally realized it, it just blew my mind.
If you're a parent of disability, it'll resonate with you.
(30:31):
If you're a person of faith and you don't have a disability in your life, it'll resonate with you.
And especially if you're a person of faith with disability, hopefully it will really resonate with you as well.
John, I have links for people to connect with you to your website so they can find your memoir as well in the show notes at bleedingdaylight.net.
I want to thank you for enlightening us, for helping us to understand a little bit of your world today, to understand the disability space, to start to see people with a disability as people, not just as their disability, and the place of those with a disability in our churches.
(31:09):
So thank you for that.
And thank you for spending time with us today on Bleeding Daylight.
Absolutely.
Thanks so much.
Thank you for listening to Bleeding Daylight.
Please help us to shine more light into the darkness by sharing this episode with others.
For further details and more episodes, please visit bleedingdaylight.net.
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