Caitlin Whyte (Host): Welcome to Healing Heroes, PDX, the podcast series from the Specialists at Shriners Children's, Portland. I'm Caitlin Whyte.

And with me today is Scott Hatley, former Shriners Children's patient, now Executive Director of Incight, a nonprofit serving the Portland community. We are diving into this story and how he now supports others experiencing disabilities.

Scott, so glad to have you on the show today. Can you please introduce yourself to us?

Scott Hatley: Sure. Thank you so much again. I'm honored to be with you all. My name is Scott Hatley. I'm a former patient at Shriners Hospital many years back. And my daytime life is I'm the executive director and co-founder of an organization called Incight and live here in Portland, Oregon. And, I guess that's where I call it home.

Host: Well, I'd love to hear more about your history with Shriners Children's, Portland. Can you dive into that a bit?

Scott Hatley: So I was born with Duchenne Muscular Dystrophy. And it wasn't diagnosed when I first got connected with Shriners. It was one of those things where I was starting to walk and crawl funny, and my parents were wondering, oh, I wonder what's going on. And it turns out that my grandfather was a Mason and a Shriner.

And so of course he was saying, Hey, you gotta go to Shriners. Shriners can help you. And so we ended up coming to Shriners.

Then, after I was kind of diagnosed, just built a connection here and it's just a awesome place to have so many relationships with people that are former staff and former medical personnel and former social workers. And, so it's, it was the best decision we could have made.

Host: We love to hear it. Well, that leads me into my next question actually. Can you tell us about the staff members who made that big impact on your experience at Shriners Children's?

Scott Hatley: Yeah. You know, and I think the hard part is there's so many of them, the list goes on and on and on. And so, you know, obviously I can't highlight every single person that had an impact or touched my life. I can specifically call out a couple people and a specific story, an incident that happened that actually kind of defines the ethos behind Shriners and, and the staff and why they're here. So about the time I was looking to go to college, it happened that the OT and the PT, who I have known quite a bit, who were helping with different aspects of positioning and just making sure that I had the equipment, assistive technology I needed and you know, was doing the stretches that needed to be done to help the muscular dystrophy;they got really invested in the process in the school I was looking at, and it turned out the two final choices I had were between two universities and each one of them was an alumni of the other university. And so it kind of became this fun little competition of which school is Scott going to go to, which of us is going to win out?

And so that was pretty fun. And then when the time came where I was actually starting to go out to the dorm and, and get myself set up; they actually came with me along with my high school growing up physical therapist and helped kinda scout out the dorms and, you know, find out like, what, what needs to be done or, you know, how is this going to fit with my chair and all that.

And so, it was obviously, well above and beyond what would've been required of a staff member, but they really just took that investment into one of their patients that they kind of seen grow up. So, I just feel like that's a good sort of microcosm of what the relationships at Shriners are like.

Host: No. Absolutely. And you kind of answered my next question already, but can you tell us more about that care you received when you were a patient at Shriners and what makes Shriners Children's such a unique place?

Scott Hatley: You know, I would say that one of the unique aspects of Shriners is really that relationship piece. I would say the, the extra care and concern, and I think there's something unique about watching families grow up and watching kids when they're first diagnosed and you know, what they're going through and the emotions around that for the families.

Or you know, not necessarily it's always a diagnosis, but you know, when you're first kind of coming up here, there's just a lot of emotion around it. And so I feel like there's something about the relationships where people kinda get that and they are able to kinda dig in with you and be a shoulder to cry on, or, you know, somebody fun to have a lighthearted moment with.

 Because you know, when you're young it's a little intimidating to come up to Shriners and you're like always worried like, well, what's going to happen? What are they going to say now? So I really received a lot of services over the years. Obviously going to the clinics and at different points, I wore braces.

Certainly I talked about the OT and PTs and helping me get the equipment I needed to be able to function.And then even just some of the support from social workers, for the family, I would say was also hugely valuable.

 And I know there's a lot of other aspects as well, but those were kind of the key points for me.

Host: So let's fast forward a bit. You're not a child anymore child, you co-found the nonprofit organization Incight and that offers many services to people also experiencing disabilities. Can you tell us more about it?

Scott Hatley: Yeah, well, and we just celebrated 20 years. So it's been, been a bit of a, a journey, so. I went to college out here in Portland. University of Portland. And it really inspired me to want to do something that would give back with my life and something that could have an impact.

And so, several of us, from UP, a couple friends, we launched the organization Incight. And we really saw the need to help people with disabilities be able to succeed and contribute to their fullest. And over time, we've really become an organization that's all about elevating expectations for people experiencing disabilities.

And so our mission is really all about changing hearts and minds, leveraging obstacles and unlocking potential. And we see that as translated in two ways. One is helping people with disabilities, with the tools they need to leverage their obstacles and unlock their potential. So we do a scholarship program, we do job fairs.

We have a curriculum for high school students, and really just kind of provide that coaching and support on one side. And then the other side of the equation is really more about how do we change the culture around disability, create more awareness and allow people the opportunity to understand disability a little bit more and all the nuances related to it.

So that's really the changing hearts and minds piece. So we actually share stories with a positive perspectives and do a lot of awareness trainings with organizations to help them kind of interact and be able to sometimes what I would call the 6-year-old questions, which are those questions as adults we all have that we want to ask, but we're afraid to ask because, we have more of a filter now and not knowing were, you know, if you talk to a little kid, they're often, they'll just ask you a question no matter how appropriate or not appropriate it is, and they're just curious. It's, there's nothing behind it. And so we're really just doing what we can to help more people with disabilities be able to go to school and be in the workplace.

Host: Absolutely. Well, like you said, you just celebrated 20 years of Incight. Can you tell us some of the highlights of that journey?

Scott Hatley: Yeah, there's so many highlights, a lot of ups and downs as you can imagine, over a 20 year period as you get an organization off the ground and then help it grow. And I would say the biggest highlights are always the people we've served, the 12,000 plus job seekers and clients that we've helped coach and help them find jobs and help them get scholarships and help them just kind of find that path forward.

And I think sometimes it's also just the hope of providing to another family. I know, I've had several families with neuromuscular diseases that have seen my story and their families felt inspired of like, oh, you know, this isn't the end. Like there's hope out there and here's somebody out there doing stuff.

And so I think some of it is also just our organization being a great example for others of how you can go about unlocking your potential and leveraging your obstacles. I would say some of the other highlights are just the opportunities of the people that myself and other team members have been able to meet, from mayors to governors, to different leaders in the disability space throughout the US and, and even in the world.

And so that's been pretty special. And just to kinda cap it off, one highlight from last year when we actually celebrated our anniversary, the city of Portland, recognized us with a proclamation on the day we were founded in February. Also our US Senator here in Oregon presented us with a flag flown over the US Capitol, in honor of that 20 year milestone.

So in some ways there's just a lot of things that it's harder to really tangibly explain of what that journey is, but I think really it just comes down to those who have been impacted the most.

Host: And Scott, as someone who has been navigating the healthcare system for some time, how does Shriners Children's compare?

Scott Hatley: It is hard to really describe how, how Shriners compares, because it's so unique and you know, I have plenty of relationships I've built with other healthcare providers in other systems, in the adult system. And yet there's just something unique about that period of time, the age group that Shriners serves.

And just, I feel like, the, the people that work here, are here because they want to really make a difference. Not that other systems don't, but it's just something about they see the need for families and the support that is needed. And, just really kinda digs in. I, I think it's also that knowing during such formidable parts of your life, you have a support system here in so many different aspects.

The journey looks different for every patient and they might not need some of the services another patient needs. And yet I think it's just knowing there's a place or a resource within the building, you know, that can support in whatever way is most needed for being able to keep moving forward.

Host: Well, to wrap us up today, Scott, what advice do you have for patients and their families who are dealing with a new orthopedic condition or diagnosis? I imagine you have a pretty unique perspective, both as a patient and now as a resource or a symbol of hope. What would you say to parents and kids in these situations?

Scott Hatley: When you, you're going to think about being diagnosed with a condition or going through it, you know, it's a scary time. And so I think one of the key reminders is that you're not alone and you've gotta support here that can help you. And then also that it's not the end of the road. It's really just the beginning.

When I was diagnosed with Duchenne Muscular Dystrophy, it was one of those moments where, you know, I started to kind of exhibit signs that something wasn't quite normal. And so my parents were trying to figure out, okay, what, what is this condition? What's, going on? And, and it took quite a while.

It just wasn't quite as easy of a diagnosis process as it is now. And so in that process, you know, they, they finally got the news and, you know, obviously their life feels shattered. It's not what they were expecting for their firstborn child, that they would be going down this road. And so what was unique is that they actually, this doctor that diagnosed me had some really poignant advice, and I believe it's really just changed the trajectory of my life.

And it's, we're sharing, you know, they, he said that, to my parents, he's like, you know, for a period of time you're going to grieve over the loss of the well child, and then you're going to have to think of it kinda like a game of playing cards in that you know, you've been dealt a specific hand. You may not like the hand you've been dealt.

And yet you're going to have to play this hand the best you can. Just keep moving forward. And so my parents really took that to heart and I, I know they already kinda had that of like, Hey, we can do this. We can figure it out. And so that was really valuable and it really set the stage for the rest of my life.

And, really they had expectation for me. And I also grew up in a community, outside of Portland that was more affluent. And it was a benefit because they really, there was expectation not, are you going to go to college, but where are you going to go to college? And so having this expectation from my parents and from the community I lived in really elevated me to be like, okay, I'm not going to be left behind. I'm just going to keep moving forward. And so that's really where I would say the biggest advice would be is don't let a diagnosis or a change in the trajectory of where you think life is going to go, stop you, because when you have expectations for people, it just really can elevate, like they're always able and willing to step up to the plate when you're, you know, expected to be there. Where if you're not, you know, you might not step up to the plate. And so they kind of were looking at this diagnosis too, of like, I might not live past my early twenties and now I'm 46 and living in probably the top 1% of people with my condition that are still alive.

So, they could have probably never forecasted the life that would've been this for me. So I would just say, encouragement to everybody else is, you know, play the hand you've been dealt as best as you can and rely on Shriners and as one of my favorite Pixar movies, Finding Nemo and maybe some of you out in the audience have seen Finding Nemo, but there's a scene where Dory, the fish is just saying, you know, what do I do when I face challenge or difficulty? I just keep swimming. Just keep swimming. So that's my encouragement is elevate expectations and just keep swimming and keep moving forward.

Host: Dory's always been a source of wisdom.

Scott Hatley: Absolutely.

Host: Well, what a wonderful story, Scott. Thank you so much for joining us and for all the work that you do. And that concludes this episode of Healing Heroes PDX, with Shriners Children's Portland. Head on over to our website@shrinersportland.org, as well as incight.org. That's I-N-C-I-G-H-T.org. If you enjoyed this podcast, please share it on your social channels and explore our entire podcast library for diverse topics of interest. I am Caitlin Whyte, and this is Healing Heroes, PDX. Thanks for listening.