Interview between Speaker 1 (Meg Ferrell) and Speaker 2 (Sara Zielinski)
Episode 110: How to Organize a Disability Pride Event in Your Town
[Introductory music]
Welcome to the Two Sides of the Spectrum podcast, a place where we explore research, amplify Autistic voices, and change the way we think about autism in life and in our professional therapy practices. I’m Meg Ferrell from learnplaythrive.com, broadcasting to you today from unceded Tsalagi territory.
Meg:
Today, you’re going to learn how to organize a Disability Pride parade in your community. And if you didn’t think this was something you ever wanted to do, I have a feeling this episode will change your mind or at least inspire you. My guest is Saras Zielinski, who’s the director of occupational therapy services at a pediatric clinic in Northern Illinois. Sara founded and led a committee to develop a truly beautiful Disability Pride parade in Crystal Lake, Illinois in 2025, and is already busy planning the next event for 2026. This episode is so much fun. Here’s the interview with Sara Zielinski.
Hi, Sara. Welcome to the podcast.
Sara:
Hi, thank you for having me.
Meg:
I’m excited to talk to you. I mentioned to you when we first started the Zoom meeting today that there’s so much about the world that just feels really, really heavy. And when I sat down at my computer today, I went, okay, what is this interview? What are we going to talk about? And it said ‘organizing a Disability Pride event’. And I was like, oh, Sara, this is exactly the conversation that I need today. And I believe that’s probably true for so many listeners as well.
Sara:
Yeah, you know, I’ve come to be aware like everybody else over the last several years that your local community is really important. And what better way to try to bring people together than to do a really great event?
Meg:
Oh, that’s so true. You’re saying this to me on the one-year anniversary of Hurricane Helene in Asheville. So, I think we’re here in my town feeling that as much as ever, for sure. And there’s just going to be thing after thing in our lives that highlights that sometimes the people we have and the people we need are those around us. So, I want to really dive into how you’re doing that. And we’re going to talk deeply about how you founded and chaired the first ever Disability Pride event in Illinois, just outside of Chicago. But before we get there, Sara, can you tell us a little bit about yourself and how you got to this place in your life and your work?
Sara:
Sure. So, I’m an occupational therapist. I’m a pediatric occupational therapist, and I’m a director at a clinic, at a pediatric clinic up in northern Illinois. And I’m a mom; I have three daughters. My husband and I live up here. And over the last several years, it has become more and more apparent to me that outside of providing occupational therapy to families and to my clients, I needed to learn more about advocating, and policy work, and policy change. And so, I came into the world of occupational therapy because I have two brothers that have intellectual and developmental disabilities as well as being Autistic. And they are grown men. They are phenomenal; they’re wonderful. They are so kind, and caring, and supportive of people. And so, I came into the world of OT through them.
But through being an OT for as many years as I have been, I’ve become more and more aware of just the systems and the society that’s not set up to support my brothers, personally, but as well the clients and the families that I serve. So, a few years ago, I think it’s been maybe three years ago now, I applied to a program. They are all over the country. It’s called ‘Partners in Policymaking’. Every state has one. Look into it if anybody is interested. There are criteria to be able to apply. You either have to be a self-advocate, a sibling of somebody with a disability, a caregiver of somebody with a disability.
And through that program, I think it was eight- or nine-months long, I learned a lot about policy, how policies come about, how we can try to influence policy change. It really gave me a lot of background information through there. Graduated from that program; and then, last year I was accepted into the Illinois LEND program, which is through the University of Illinois, Chicago. And that stands for ‘Leadership Education for Neurodevelopmental and Other Related Disabilities’.
And through that, I really worked on my leadership skills and continuing that advocacy and just trying to get as much knowledge as I can outside of being a treating therapist to support the community that’s my personal community as well as my professional community. So, that’s a whole lot of background information. But that’s kind of where the idea for a Disability Pride event came from, just from a personal as well as a professional perspective. So, and then it just started with an email. I emailed out, and yeah, that started the snowball for the event.
Meg:
How cool. All right. We’re going to get into the details of how you did it. But I want to start with the why. Like, why was hosting a Disability Pride event important to you?
Sara:
So, I’m not sure about other communities, and states, and countries. But here in Illinois, the only event that I am aware of as far as a Disability Pride event is in Chicago. And they do a phenomenal job. They do a parade. It is huge, they have such a great turnout for it. But I live outside of Chicago and it’s not that many miles, but it’s a long distance. And so, nobody in my community is driving an hour-and-a -half to go to an event in Chicago. And I live in such a great community. The city that I live in is so wonderful, and so inclusive, and so welcoming of my brothers. And I was like, well, what better of a place to host an event when I know that it would have a turnout? I know that there are people that will show up, and people that will enjoy it, and people that will share the information. And, you know, it’s just community is so important, especially local community. And like I said, if people can’t get an hour-and-a-half away to go to an event like this, let’s bring the event as close as we can and foster that community. That’s so important.
Meg:
I love that. What’s the name of the town where you live?
Sara:
Crystal Lake. Crystal Lake, up in McHenry County, so Northern Illinois.
Meg:
I’ve said this before, but the Chicago suburbs are like — I feel like we’re based in the Chicago suburbs. And Chicago, like, I came to Chicago to give trainings like five times in four months last year. It was just over and over and over again. There’s a lot happening in that area. I feel like you cannot have too many Disability Pride events. So, that’s awesome. One thing that I hear a lot when people are teaching how to organize is don’t try to go alone, right? Like, find the other people who already care about the things you care about and are already organizing around it. So, tell us about your first steps. How did you find your people and your co-organizers?
Sara:
Sure. There is an organization in downtown Crystal Lake, and it’s called ‘Downtown Crystal Lake’. And they organize a lot of community events, parades, and family festivals. And part of their mission is inclusivity, and wanting to build community, and have all members be a part. And so, it was June of 2024 that, you know, I was hearing about the Disability Pride event happening in Chicago and the parade. And I was like, you know, we go to these events, the Downtown Crystal Lake events all the time with my own children, and my brothers, and my other family members and friends. And I just sent an email. And I emailed the executive director and I said, “Hey, it’s not a chance for 2024 —” This is June of 2024, not going to happen in a month. “But any interest in doing a Disability Pride event for next July?”
And I just hit ‘Send’ on the email and thought, well, if I ever hear anything great, if not, you know, I’ll just try to pursue another avenue. And to my surprise, within a day, I got an email back from the executive director and she was — she loved the idea. She was familiar with my brothers because anybody that is in Downtown Crystal Lake, my brothers are definitely there. They’re people that everybody knows. I call them the unofficial mayors of the town. Everybody knows them and they know everybody. So, she knew my brothers. She has a family member who is an occupational therapist as well. So, she was familiar with my line of work. And we first had a phone call. Then we met in person, and then it just started to snowball. And she just thought it was such a great opportunity to bring an event and to be a part of it. And having that organization backing us helped with a lot of the logistic part of it, which was really helpful for somebody that I had never ran an event of that size.
Meg:
Yeah, I mean, that’s very, very smart. That’s honestly a strengths-based way to organize the event. Like, they had this skill; you had this other skill and this passion. You bring people together on what they already know how to do, and are good at, and care about.
Sara:
Yeah.
Meg:
All right. Take us to the event. What did it look like? What did it feel like? What happened? What did you do?
Sara:
So, it was — there were a lot of things I had to learn. I had to learn how to put together a proposal for an event. I had to present it to the board at Downtown Crystal Lake to see if they would even as a full board, because I was talking to the executive director who thought it was really great. But with it being a nonprofit, I had to present all of that to the board. And so, I had to learn how to put a proposal together. Like I said, they helped with more of the logistics of submitting permits to the city, things that I did not know that I would need, like barricades and all of that to set up an event, which was really great. But my focus with my proposal was this was an event for celebration, this was an event that was going to center around the disabled community.
And so, I kind of wanted a three-facet event. And so, the first facet I wanted was performers. And so, I wanted performers that were identifying as being part of the disabled community. So, we had a drum line. They perform all over and they do a phenomenal job. So, we had a drum line come out. We had singers come out. We had other musicians come out and they had their slotted time to be able to perform during the event. The second part of the event, I wanted to be community resources, but I refused to allow any for-profit businesses as a part of those community resources. Because, again, I wanted this to be a celebration and a focus on the disabled community.
I work at a for-profit clinic. We don’t need to be at events like this. This is not what the event was for. So, it was only non-profits that were accessible to the disabled community at no cost. So, those were the resources that we had. That was that second facet. And then, the third part of it is we invited small business owners, anybody that, again, identified as being part of the disabled community, they could fill out our form, set up a tent, and market and sell from their business. Or whatever, whatever their business entailed, they could share that information and get it out into the community. So, it was three different things happening within the same events, but really focusing on celebration and celebrating the diversity, celebrating how beautiful and the lived experiences of people with disabilities was our focus.
Meg:
So, what went well? What choices did you make that you were like, “Oh, that was great. This worked”?
Sara:
Bringing in people to help. [Laughs] So, I, like Meg had said, I chaired the event. It was my baby that I was kind of bringing to fruition. But as a part of the planning committee, I had self-advocates, I had caregivers of individuals that had disabilities, as well as having other providers within the community that were a part of the planning committee. So, that was great for my end. There was somebody that was artistic and able to design our shirts, which I had to wear our shirt. She did a great job.
Meg:
Put a picture of it in the — I can’t quite see it. I see the word ‘disability’. What words are there? Let’s see. ‘Disability pride event celebrating the beauty, diversity, and lived experiences of people with disabilities’ with the Disability Pride flag. Beautiful.
Sara:
Yes, yes. And so, we had somebody that was more artistic and really great at that. A skill that I don’t have is going to people and asking for money. And so, we had somebody that was like, I’ll go out and get sponsorships. I don’t mind being told ‘No’. So, she was in charge of that. We had somebody else that was in charge of volunteers. We had somebody else that was in charge of making sure that we were reaching out to the small business owners. We were reaching out to the non-profit community resource organizations. We were able to bring somebody else in that had a lot of members in their community that were part of the community of performers and people that had disabilities that were performers or artists and musicians. So, we were able to bring that person in.
So, I think what went well was knowing this was not something I was going to be able to run on my own. And I needed to be able to parcel who had strengths and what their strengths were and what they could bring to the table to help to help organize it, especially because by the time I had proposed it to the Downtown Crystal Lake organization, I sat in front of their board and presented the proposal, they approved it, then we had to send permits to the city — by the time that it was all approved, it was April, and the event was July. So, you know, there was a little bit behind the scenes stuff going on, but we really couldn’t put that gas pedal to the floor until we had the city approval. And so, from April to July was a whirlwind of planning.
Meg:
Oh, my gosh. So, a year plus to plan is another must do.
Sara:
We are, we are already talking next July.
Meg:
Yeah, I bet you are. All right. So, what lessons did you learn or what would you do differently?
Sara:
So, we originally planned the event in — if anybody is familiar with Crystal Lake, Illinois, we have an adorable downtown area, and it’s got the old shops, and it’s got the train station right there, restaurants. It’s just such a small town feel and such a community feel. And we planned on the event being outdoors. And at the end of July, we thought if we moved it early enough into the day, we would avoid some of that heat in, you know, in the summer. Unfortunately, we had some really bad storms coming through that week and we, the day before the events, made the really tough decision to move the venue from outside to indoors.
It worked. We pulled it off. It was a lot of chaos the day before of different committee members running around and reaching out to their resources of who could host an event that we were expecting hundreds of people to attend. And we were able to find a location and we were able to move it indoors. Going forward, our forward plan is to always have it indoors. As much as we love our downtown Crystal Lake location, it just — the weather, the weather definitely threw a wrench in there. We were able to make it work. Everybody still showed up. Thank goodness for communication through social media, and the website, and all of those great things. But that would be something that we are for sure doing differently.
Meg:
Weather is so tricky for organizing these big outdoors events. We just yesterday had just our neighborhood annual party, and at the last minute it rained and they moved it into a church. And most of us with kids stayed outside, right. Because our kids, it was hot in there. It wasn’t a great space for kids. The kids were like minor or wild, right, too wild for that space with all of these, like, older folks sitting around eating. Also, there was a bounce house outside. So, we played in the wet bounce house and, you know, just hoped nobody got hurt. But I’m curious what you did to make that indoor space safe, and fun, and inclusive for kids with a variety of needs and neurotypes.
Sara:
Yeah, yeah. So, that was the biggest hurdle was looking at indoor locations frantically the day before. And so, we went to a couple of community members that are part of that Downtown Crystal Lake organization and they were so willing to open their doors to us. But the venue wasn’t going to work. And so, we had one of our committee members is a member of a church, a local church, and they’re an inclusive church. They’re a wonderful, phenomenal organization, the church is. And they opened up their doors and it worked because we were able to have a conference room, a very large — I don’t know what you would call it — an event hall, as well as having their chapel where the performers could be.
And so, as much as it was a last-minute decision, it worked really well that we could have the small business owners and we could have the community resources in this event hall. But then, right next door was the chapel that we were able to have the performers in and people were able to go between those two spaces with a large room between the entrances where people could mingle or hang out. So, even though it was a last-minute decision as far as indoor spaces go, it worked out. It worked out really well. But it was part of the decision when we were going the day before to all of these different locations was, is it going to work here? Is it going to work here? Is it going to work here? Because we really wanted to still hold those three very important facets of the event and make sure we were doing our service to everybody that was going to be coming.
[Intermission begins]
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[Intermission ends]
Meg:
Sara, I’m curious what you did to help foster a culture of inclusivity at this event so that everyone knew they were allowed to come as they are and feel welcomed in the space.
Sara:
Sure. I mean, everything on social media, we made sure that we were communicating who was going to be there, what organizations were going to be coming to share their resources, what small business owners — as they were filling out their form, if they were interested in being a part of the event — we were including who they were, what they were selling, what they were marketing, what the organizations brought in. We made sure that this space had an elevator because there was some stairs getting up into the space. So, they also had an elevator so that any wheelchair users were able to get in and out of the space safely.
The chapel, like I said, where the performers were, we were able to close the doors so you could stand on the outside of the clear doors and participate that way if going inside was too loud for you. And yeah, I think just having that open communication of who was going to be there, what was going to be offered and allowing people to come and go as they pleased. And some people stayed for a really long time and some people came, saw things, left, came back, checked out something else, left. So, we really tried to just communicate as much as we could with people going so that they were aware of what was going to be there.
Meg:
I love that. Yeah. Knowing what to expect, knowing what it’s going to look like, what it’s going to feel like, and then having a lot of flexibility and autonomy in how you participate. What was the impact of this event, Sara?
Sara:
So, I hope it was big. We’ll see. Now, we probably had, we’re guessing about 300 people come through the doors. I said I wish somebody would have stood at the door with a ticker, but we had so many people cycle through. So, we’re already talking about next year and I am working with the local college. There is an OTA program, an occupational therapy assistant program. And at the clinic that I work at, we take student fieldwork students all the time. So, we have a really great relationship in that regard. And I was able to talk to the director there and she is working with one of her classes to have students — don’t ask me what the assignment all entails — but they have to do something community outreach related, planning related.
And so, I am going to actually be going at the end of this month to present to her class about the Disability Pride event. There’s going to be a group of students that are going to take this idea and pitch it to the college. And so, the hope is that we are going to have it hosted there, which will allow it to be even bigger. And, you know, the thing that hit me during the event this past July was the number of people that came up to me and said, “I hope you’re doing this again. I hope you’re doing this again.” And I was like, yeah, there’s no reason to not do this again. And so, I think it’s just the impact is people were looking for something like this. And yeah, I mean, I just — I can’t even count the number of people that said, “I hope you’re doing this again. This is great. I hope this isn’t a one-time thing.” And so, I’m really hoping that working with the college will allow this to be even larger. They have lots of indoor space and lots of big space. And so, hoping that it’ll just keep growing.
The other thing that I’m hoping for is over this next year or so working towards making this a non-profit so that way the events can grow into not only hosting the Disability Pride event every July, but hosting other events or being a community resource for the people in McHenry County. And my biggest goal with running this event was creating that community. And I really think it’s done that. I mean, there were so many familiar faces, but there were so many faces that were not familiar to me, but were familiar to each other, and, “Oh, my gosh, you’re here, too. Oh, I didn’t know you were coming!” And so, it was a great way for people to build more of their community, see who else is a part of their community, and kind of have that outreach. So, that’s our hope continuing to go forward is just to build that community.
Meg:
Very cool. I hope you do this again. It’s such a beautiful endorsement. And I also love thinking about the ripple effect of all of those future OT practitioners who will have had this experience and bring it forward into whatever communities they wind up in. For folks who are thinking about planning a Disability Pride event in their community, what do you want them to know?
Sara:
Just do it. Just go for it. It was a simple email that turned into a, “Hey, let’s talk about this further,” and then became incredibly overwhelming. And as soon as I stepped back and realized I don’t have to do this by myself, and I can bring in other community members, and build this committee, and be honest with the skills that I don’t have — the number of times that I would email the executive director of Downtown Crystal Lake and say, “How do I do this? I don’t know how to do this.” So, recognizing the skills that you don’t have, being willing to ask for help, being willing to put together a committee of people of varying strengths and recognizing those strengths and asking them, “How do you think you can best support this event?” And having people raise their hand and be like, “Yeah, I’ll do the fundraising part of it”, “I’ll do the sponsorship part”, “Yes, I’ll do the designing of the logos and looking at contacting people for shirts”, “And I’ll contact volunteers”, it was just so great to have so many people with so many different strengths.
But I would say just, you know, just go for it. And it doesn’t hurt to ask. I mean, we had so many community members that were willing to donate things to the event because the person that was working on the sponsorships just asked and, “Hey, would you be willing to donate and we’ll put your sponsorship on the back of the shirt.” And so, we have a bunch of logos of community businesses and organizations that were like, “Yeah, we’ll donate that. Sure, we’ll give you a great discount on that.” And so, even though it felt incredibly overwhelming, being able to ask for help and, you know, throw a question out there and see if people would be willing to participate or donate, it really went a long way.
And it builds community. So, if we can offer an opportunity to celebrate a community that doesn’t always get to be celebrated — and a lot of times from my personal experience, as well as clients and their families that communicated to me, they don’t feel like they’re a part of the larger community. And so, if we could build an event that gave them an opportunity to be a part of a community, to build connections however they want to build them, and give them that space, that was that was the most important part. So, I would say just do it. Just try it. Go for it.
Meg:
Yeah, I love your focus on building from everyone in the community’s strengths. What do you have to offer? “Oh, I can do social media. Oh, I’m a photographer. Oh, I’m a graphic designer,” right? As opposed to saying, you know, “Here are these three jobs. Like, can somebody volunteer for this?” When you really pull from what people are passionate about, what they’re good at, what their strengths are, everything kind of has a spark to it. People are participating in a way that fills their own cup because they’re like, “Oh, I’m good at this. I have something to offer. I love doing this.” And I’ve always run Learn Play Thrive like this. I just watch and I’m like, “You are good at this. Like, you do this part.” And I kind of fill in the gaps of whatever. But I love grabbing people, figuring out what they love doing, what they’re best at and letting them shine like that. And everyone benefits.
So, I love how you highlighted that that’s how you organized and ran this event and the impact it had on bringing people together and modeling inclusivity for your community as well. Sara, I want to zoom out a little bit because so many people listening have this experience of, ‘Okay, there’s so much wrong. There’s so much that needs to change. I’m trying to do my own job in the best way I can, but that only has so much impact. I want to do a little more, but I don’t know what to do and I don’t know how to do it.’ And you describe yourself as someone who practices and has practiced for a long time, but also really works on policy and advocacy. Can you talk a little bit about how people can approach that or give some advice to folks who don’t know how to start?
Sara:
Sure, yeah. If you have the opportunity to look at the Partners in Policymaking program in your state, if that’s something that is available to you, I would definitely look into that. And I have realized over the course of my career that networking is so important. And it’s amazing the amount of people that I have learned about locally and the organizations or what people are offering just through the opportunities to network. And so, you know, having those people that I can reach out to when, you know, I have questions or I have an idea or I’m thinking of doing something. Yeah. And so, as much as I would — I think any of us needs to start local. And I can call my legislators, and I can send emails and I can, you know, attend rallies, all of these things that I have done. But if I can make a change locally, and like you said, Meg, if it’s the OTA students that are part of this that then branch out from there through the Partners in Policymaking program, you know, they gave us a lot of tools and a lot of education in regards to policy and policy change, but I think one of the things that they emphasized so much was that change happens local.
And, you know, if we can — I was able to receive after or as a part of this event, as well as after the event, we had the mayor show up. And the mayor of Crystal Lake came to this event and he was so appreciative of the event. And then, when I went to the Local Park District board meeting, he saw me there and he came up and gave me a hug, and he knew I was giving, you know, a public statement during the board meeting. So, it’s just having that network and recognizing, oh, my gosh, that’s the mayor that came to this event, and going and saying ‘Hello’, and thanking him for coming.
And then, days after the event, I got a letter from one of the local legislators just saying, “Thank you for hosting this event. I heard it went great.” They weren’t at the event, but they had heard about it. And so, you know, starting local and it doesn’t need to feel overwhelming. I don’t think I’m going to change Illinois. I don’t think I’m going to change the United States, I don’t think. But I hope to change Crystal Lake or McHenry County and the people that are in power in those areas are seeing this, and recognizing it, and appreciating it. And even if it causes them to think about something differently or causes them to reflect on something, I feel like that’s enough change that I’ve hopefully impacted.
Meg:
Yeah, I could not agree with you more. And I think that we don’t know how far those ripples of change are going to go, and we don’t know how they’re going to snowball. I really agree with you that we shouldn’t underestimate getting to know the people around us, connecting with other people who care about the things that we care about, and planning how we can use our effort and energy and time to do something that moves our local community towards, like, in the direction of the world we want to live in. I think that’s really empowering. And I’m so grateful to you, Sara, for everything you’ve shared today and for your work. And I’ll put all the links in the show notes. Is there anywhere that people can find you or specifically the Disability Pride event online that you want to direct them to?
Sara:
Yeah, and I’ll make sure you have any of the links. But we are on Facebook. We have our Disability Pride event as well as the event page from this year. You just type in ‘Disability Pride Event, Crystal Lake’. And the event for last year was 2025. But the page will stay up and running. And as we start planning 2026, all of the information will be going in there. Yeah, and I work at a little pediatric clinic up in Northern Illinois. It’s called HLC Therapy Group. I’m the director of OT up there, and we do such a great job here at the clinic of providing that community. We just got done running our third Annual Fall Fest yesterday. And so, cleanup is going on from that event. But you know, we’re always trying to host events that are inclusive, that are welcoming, that are supportive of the community. And so, yeah, those are the places to find me.
Meg:
All right. Well, I know we have a lot of Chicagoland people listening. So, y’all go check it out. And thank you again, Sara.
Sara:
Thank you so much. I appreciate it.
[Ending music]
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