Episode 41: Amanda Steijlen on Confidence, Connection & Care

Episode 40 Show Notes

Amanda Steijlen is a therapist, lifestyle creator, and founder of Wheelie Big Dreams, a nonprofit that helps people with disabilities pursue their goals. She also leads True Bloom Therapy, supporting clients through life transitions with strategies that are both practical and grounded.

In this episode, Amanda shares her path to mental health work, the ways we misunderstand independence, and how caregiving can be reciprocal. She speaks candidly about online self-image, burnout, and the importance of showing up as your real self especially when people expect you to hide what you’re going through.

Amanda also reflects on Disability Pride Month and how it intersects with mental health, personal growth, and finding purpose. Whether she's guiding clients through the five core human needs or cultivating supportive friendships, Amanda emphasizes the power of real connection and redefining what success looks like.

Instagram: @amandasteijlen
Website: https://www.truebloomtherapy.com
Nonprofit: https://www.wheeliebigdreams.org

Transcript

Erin Hawley:

Hey, listeners. Welcome to another episode of Everything You Know About Disability Is Wrong. We are your hosts.

Lily Newton [00:00:47]:

I'm Lily Newton.

Erin Hawley [00:00:48]:

And I'm Erin Hawley. And today on the show we had a lifestyle creator, teacher, and mental health therapist, Amanda Steijlen.

Lily Newton [00:00:59]:

Amanda is the founder of Wheelie Big Dreams, a nonprofit organization that helps people with disabilities pursue their goals, and the owner of True Bloom Therapy, where she assists clients in navigating life's challenges with practical, actionable strategies.

Erin Hawley [00:01:12]:

Welcome to the show, Amanda.

Amanda Steijlen [00:01:16]:

Thank you so much. I'm so excited to be here.

Lily Newton [00:01:19]:

We're so excited to have you. Before we dive into questions, let's do our audio descriptions. I can start. This is Lily speaking. I am a mixed race woman with half blonde, half brown hair, and it's cut into a new kind of spiky do. And I'm wearing my usual black turtleneck and the necklace that I will fidget with throughout the whole episode, as I do in most episodes. Take it away, Erin.

Erin Hawley [00:01:45]:

Hi, this is Erin speaking. I'm a white woman with red hair, blue eyes, and I'm wearing a blue shirt. And I'm sitting in my wheelchair in my bedroom. And I would pass it to Amanda.

Amanda Steijlen [00:02:01]:

Hello, this is Amanda speaking. I am a white woman. I have blonde hair. It is curled today, which is not super typical for me. I have hazel eyes. I'm wearing a pink shirt, and I'm also in a wheelchair, although you cannot see it in the frame anyway, so you wouldn't know that even if you could see it.

Lily Newton [00:02:25]:

Amanda also has the most incredible, like, dewy makeup look. You are giving lifestyle content creator because it's very trendy makeup. You look amazing.

Amanda Steijlen [00:02:36]:

Thank you so much. Yeah. I'm actually filming an ad today. So this is not necessarily what I look like every day. Just to normalize that, the life of.

Lily Newton [00:02:46]:

A content creator, it's like, okay, today I'm gonna get dressed up. We gotta film everything.

Amanda Steijlen [00:02:51]:

Exactly. Yeah. We gotta use the energy where we have it.

Lily Newton [00:02:55]:

Absolutely. I feel like, yeah. The life of managing being a content creator and just Managing your daily spoons, that's like, a big skill that disabled content creators have to have to manage.

Amanda Steijlen [00:03:06]:

Yes. It's a constant battle.

Lily Newton [00:03:09]:

Absolutely.

Erin Hawley [00:03:11]:

So the first question we always ask is the name of the podcast. Is everything you know about disabilities wrong, and what do people get wrong about you?

Amanda Steijlen [00:03:24]:

I feel like something that a lot of people get wrong about me and about a lot of the disabled population in general is that we can't live fulfilling lives with disability. I think that it's something that we have internalized ableism sometimes with. And other people also see us in the way that we can't be happy being in a wheelchair, but. Or disabled in general. But I feel like I have built. I'm a entrepreneur of many businesses, and I've been to school, and I'm a therapist. But some of us aren't able to do that kind of stuff. And it doesn't mean that we aren't able to live fulfilling lives.

It's just a different way fulfill that.

Lily Newton [00:04:11]:

Snaps for everything you just said and the nuance you included. Because I think that that's super important in, like, it can be easy to. In conversations where people are showing such, like, ingrained ableism of just, like, assumption that disability means sad, it can be really easy to jump to, like, no, I mean, I'm out and about and I do this, and I do this. But then it's important to remember that, like, our work or our education or whatever, that's not what makes us valuable humans. It's that we're humans. Like, it's that. And I appreciate you adding that in because I think that that's. Yeah, this word fulfilling just means living a real life.

And, like, so many people will say, like, I don't think disabled people could live a happy life. But, like, what is a happy life? You know, like, happy is just one of the many emotions that we all feel whether we're disabled or not.

Amanda Steijlen [00:05:05]:

Yeah. As a therapist, one of the big things that I touch on in, like, theory is the five basic needs. And like, with my clients, we really like going into all of the different aspects of your life and filling out, like, what you are fulfilling and what you need to work on. And just because you may need to work on, like, independence as a disabled person, like, it doesn't mean that you need to be able to get dressed by yourself. That might not be what independence means to you. And that's okay. We just have to redefine things and figure out what can satisfy those needs for you.

Erin Hawley [00:05:45]:

I love that because, like, we have this discussion at Easter seals about whether it's independence or interdependence. And I feel like the latter. Interdependence, like no one is independent, whether you have a disability or not. Everyone needs help. Everyone is reliant on other people to live, whether it's getting your food, making your clothes, whatever it is. So independent to me is the ability to make decisions about your life that are authentic and safe for you. And whether or not you need extra help doesn't mean you're not independent.

Amanda Steijlen [00:06:40]:

Yeah, I totally resonate with that. My husband is my full time caregiver. He does pretty much everything for me. He helps me turn over in bed, go to the bathroom, transfer, all of that. And the thing is, is people are like, oh, he's so nice for being your caregiver. But they don't see the caregiving I do for my husband. And I think that everybody has caregiving given to them. Like, I schedule all of the appointments always.

He doesn't know where he's going ever, or what he's doing. He doesn't order the groceries. You know, I think you're right in saying that everybody receives, you know, caregiving.

Erin Hawley [00:07:23]:

Yes, for sure.

Lily Newton [00:07:27]:

And I like the like, working on the kind of re reframing what that, like, definition of independence is. Because, Aaron, you're so right with the like. I think a lot of people hear independence and think it means like living in a studio apartment by yourself, paying all your bills by yourself, doing all this. And it's like, hey, in the course of human history, I don't think that has ever been the, like, norm for how people survive. Even the level of, like, cooking, all of cooking every single meal for yourself, like that is relatively new in the world of human history. And it's like communal living and things like that are actually a lot more, quote, unquote natural, I think. But in the society we live in today, independence is really prioritized. So I think it's important to kind of redefine that and realize that, yeah, there are independent people who need 24, 7 caretaking.

And that doesn't mean that they're not independent. But the independence really comes with that layer of autonomy. So I love that you, you focus your therapy on that. And the five. What are the five basic needs for anyone who's listening and hasn't heard them?

Amanda Steijlen [00:08:42]:

Yeah. So let me pull them out of my brain. Love and belonging is one of them accomplishments, like your basic needs, like food, water, shelter, you know, I'm gonna restart that and pull it up and make sure I have all of them because.

Lily Newton [00:09:02]:

Pull it up. Because this is interesting.

Amanda Steijlen [00:09:05]:

I have a worksheet that I usually I'm going off of, so I'm like, blanking.

Lily Newton [00:09:11]:

I promise we won't just make you do therapy for us on this call.

Amanda Steijlen [00:09:15]:

Nah, please do. I love it. I don't mind it. For real. That's not sarcasm. My tongue is always off. Okay, so, yeah, the five basic needs are like your survival needs. Food, water, shelter, love and belonging.

Amanda Steijlen [00:09:32]:

That's like your friendships or relationships, Community, stuff that you do. Power, which is like accomplishments. It could be anything from working a job or like doing some sort of art or finding a hobby. It doesn't need to be some physical accomplishment, which a lot of people confuse with power. Freedom, which is where that independence comes in. And autonomy and then fun, like hobbies, things you do that bring you joy. So those are your five needs, and we basically just like, break them down and we figure out which is the most important for you to work on first, and then we start making life changes. So it's very, like, actionable steps in the therapy I like doing.

Lily Newton [00:10:29]:

Yeah, my autistic brain is like, oh, my goodness. It's so, like, so step by step and logical feels. Because sometimes when I like, especially if I'm starting with a new therapist, I'll be like, I don't even know where to begin. Like, what. What we're going to tackle. That feels, like really practical. And I like that idea of being able to narrow down, like, yeah, I don't feel that, like, belonging sense right now. It's like, okay, what can you do to find those people? That's awesome.

I really like that. Which kind of leads into our first scripted question, which is like, we're curious. What drew you to becoming a mental health therapist? And were you always in the world of talking about mental health, being comfortable talking about it, or what was that journey like for you?

Amanda Steijlen [00:11:12]:

Yeah, so, no, I definitely. I don't know if I wasn't comfortable, but I wasn't aware. So it was kind of a journey for me. I started off having panic attacks, which I didn't know what they were, but my husband knew what they were because he had been in therapy and had dealt with panic attacks. And I found out these things that were panic attacks I had been having since I was young. And my parents thought it was like, oh, low blood sugar, like, eat a banana or whatever, like, love them. But no, I was having panic attacks. I was shaking, like, couldn't breathe, was waking up in the middle of the night.

And so I started having severe anxiety. And that happened at a time in my life where I was losing abilities, like the ability to transfer. I have limb girdle muscular dystrophy, type 2A, which I didn't say before, but it is a progressive condition. So it was something that I was trying to adjust to with losing dis. Like abilities. And I was having a hard time adjusting, and it was a transition for me. So I started having those panic attacks, and I went to therapy. I had a battle with my mental health for, like, two whole years.

Started a SSRI medication. And after my life had just been, like, completely changed through going through therapy, I was like, I want to help people like this. And something I looked for in a therapist that I could not find was somebody that understood disability. There are not many therapists with disabilities out there, and it's very hard for people to understand when they haven't been through it. So I started a rehabilitation and mental health program at the University of South Florida, and I did a training that was on disability and on mental health. So I'm a certified rehabilitation counselor, and I'm a mental health therapist.

Lily Newton [00:13:24]:

That is. Yeah, the. The idea of having a therapist who you don't have to explain, like, disability and ableism to feels so exciting. And many times in this episode, like, on this show, we've talked about, like, the kind of common theme of medical trauma that disabled people often can relate on. And, you know, those conversations end with us being like, we need more disabled doctors, like, actually disabled people in the field. And I don't think we have extended that on this show specifically, but that extends through mental health care and, like, mental health practitioners who are disabled themselves, not even just like, someone who calls themselves an expert on disability, but someone who identifies as disabled. I think that's really, really incredible because even what you were just saying there, I'm sitting here listening, and I. I found out I have Ehlers Danlos syndrome about a year ago at this point.

And it. It is getting. It's. It's progressing as I knew it would. And especially if I don't, like, accommodate myself, I make things worse, and my joints end up, like, I have some effects of not taking care of myself now that I'm starting to see. And that's, like, that feeling of losing control, of, like, I don't know when what this is going to get to. I don't know when there's going to be a point where, like, my hand pain means I can't write with a pencil that day. Like, what is that? That feeling you explain? Like, I know you already understand it, and that's such an interesting thing to think of.

Like, oh, my God, my therapist just gets it immediately, so he just can dive right in. Has there been, like, moments in your practice where you have, like, just seen those impacts of, like, wow, I'm. I'm able to do this because I am disabled myself.

Amanda Steijlen [00:15:13]:

Oh, absolutely. Yeah. I think I have a few clients right now with disabilities, and they tell me, like, I feel so much more comfortable sharing things with you. They tell me about experiences with other therapists where they'll be like, can't you just, like, work out? Like, can't you just, like, do that kind of stuff? And, like, with me, I feel like they feel safe, and I feel that connection with them. I think that one of the biggest parts of therapy is the relationship you have with your client and that connection you have. And it's like an unspoken connection that we have with our community that has brought, like, so many, you know, positive experiences in therapy.

Lily Newton [00:16:03]:

Absolutely. That makes so much sense. This is kind of switching gears a little bit, but I want to relate it back to this overall conversation we're having, because we're filming this. It's July 10th that we're filming this. It'll come out later this month, but we're in the thick of Disability Pride month. So Happy Disability Pride month, the two of you. And I'd love to talk about disability pride a little bit, especially in the sense of, you know, you've brought up, like, having panic attacks, understanding that you have something that is going to be progressive. What does balancing pride with anxiety feel like, or how do you manage that?

Amanda Steijlen [00:16:42]:

Yeah, I think it's really important to normalize having feelings of anxiety or, you know, sadness or grief, you know, when going through adjustment periods or just off and on in life with a disability or not really. I think that there's a lot of work to be done internally, which I think is why mental health, like, therapy is so important for people with disabilities. And I think that we need to constantly be working on ourselves, because we're constantly changing. We're constantly evolving. There may be times where you don't go to therapy for three months, but that's okay if you're doing well. But then sometimes you're going to want to go every week because you're going through a transition. And I think that kind of how we were talking about those five basic needs, and if you are feeling fulfilled, you will feel more proud of who you are as a person. With a disability.

And so I think finding your purpose is a huge deal in feeling that disability pride that we're celebrating this month. I think that the pride is something that should not just come out once a year, but it does give us a motivation to get to the point of feeling that pride.

Lily Newton [00:18:10]:

Yeah, I like that you mentioned purpose in that, because I think that in a society, world, whatever, that kind of can make it seem like we shouldn't be here. It's very empowering to be like, no, I should be here in this exact body and this exact brain, because I'm meant to do this. Like, that's a really important thing. And I think even, you know, like, hosting this podcast is one of my favorite things I've ever done in my career. There'd be no point to me hosting it if I wasn't disabled. So, yeah, this podcast brings me a ton of disability pride.

Amanda Steijlen [00:18:48]:

That is really great. I love hearing, and I love hearing people's, like, reactions to the things that bring them pride. Like, no matter what it is, I think it's so fun to see people light up. And, like, when you talk about the podcast, I see you light up. Like, you're smiling, your eyes are bright. Like, and you can see that in people. And it's so fun to try and dig out what lights people up like that.

Erin Hawley [00:19:15]:

Totally.

Lily Newton [00:19:17]:

Erin, I want to hear your thoughts on pride.

Erin Hawley [00:19:20]:

I like it. I think pride is a journey. It's not. You get to it, and then that's it. There's, like, ups and downs in your life. But to have that pride, it is very important to kind of keeping your acceptance of yourself. And I am. It's good.

I'm sorry. I have really bad sciatica today, and so I'm, like, in pain, but I'm here, and I have tried.

Lily Newton [00:20:02]:

But, hey, that's important to. To be, like, honest about where you're at, because that's why pride can't be one month out of the year. Because what if I'm in a lot of pain that month? Yeah.

Amanda Steijlen [00:20:13]:

And that is very real. And I think. I mean, it's really cool to talk about on podcasts. And, like, even when you're with people in general, like, today, I have really bad brain fog. Like, it's horrible. Like, I feel kind of anxious. But we're here, and, you know, that means something, like, to be able to show up authentically and for you to be honest, you know, even with us. And if this makes it onto the, like, recording with everybody, you know, because it normalizes being able to talk about how you're actually feeling.

Not, like, how are you? I'm good. Yeah.

Lily Newton [00:20:51]:

Yes. Yeah. And it's funny because I was sitting here thinking, like, oh, man, I'm just, like, not very good at humaning today. Like, I feel like I'm not humaning as well as I normally do when I'm getting ready for these podcasts. And it's like, all three of us sitting here dealing with our own shit. And I don't think anyone listening or watching was going, like, they all seem off. Like, I don't think that was happening. But then there is a level of, like.

And maybe this is being autistic speaking, but, like, that kind of veil drop of, like, okay, now we're all in the room. We're all here with pain and fog and awkwardness. Like, and we're here. And that. That's what makes it. That's pride is, like, getting to a point where you can show up and know, like, I'm supposed to be here even if I feel like crap or me feeling like crap matters and can make someone else who feels like crap feel understood. Yeah.

Amanda Steijlen [00:21:47]:

And I feel like being able to show up authentically is a superpower. Like, it really is. Like I was saying, with connection. Like, with a therapist and a client, it's the same way with friendships, with anything. And I think that this is part of, you know, normalizing this type of behavior in society. So really, we're doing great here. And I think it brings up a good point of how other people see you versus how you feel internally. Like, from my perspective, you guys seem totally, like, chill, like, everything's fine.

Like, so I think that how you see yourself and your inner world is very different than what other people see from you too.

Lily Newton [00:22:36]:

Yes. And it's such a gift when people do decide to share their inner world. I think, like, that's. Oh. And that's. I think why, like, disabled friendship is so beautiful in that. Like, maybe it's the permission to share that kind of stuff. But I think that that certainly makes me feel authentic when I'm with other disabled people.

And we're just like Kiki about the realness of it, and it makes me feel confident and good, which I feel like this leads in perfectly to the fact that we. We've been talking about confidence at Easter Seals and what confidence means, and I'd love to hear your thoughts on, like, the word confidence and having confidence from a mental health professional especially what. Like, the role of confidence is kind of for. Especially people with disabilities.

Amanda Steijlen [00:23:24]:

But Everyone, Yeah, I think confidence and pride, like, go, you know, together, like, very well. I think that confidence is again, like something that you have to consistently be working on. Confidence to me means being able to show up and talk about, you know, the knowledge I have of disability, because I have a disability and my education, but really just showing up and offering that knowledge and understanding my worth. Confidence obviously has some to do with, you know, how you feel physically, and that's just part of societal norms. But I think we're trying really hard to normalize being real. And like I said, I don't always have my hair curled and have makeup on. Like this is like a two day a week thing for me. Like, it's not normal.

But I think having confidence just in who you are and being authentic is something really to be proud of. And the restructuring of your brain to be proud of who you are is what brings confidence.

Commercial Segment:

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Lily Newton [00:25:09]:

I like that you bring up authenticity in that because I think that there's something with kind of the shift we've seen in social media and maybe just marketing in general, where we are really, I think as an audience or of consumer is really craving that authenticity. And my hope is that with people becoming more authentic on the Internet, you know, it's helping people realize that what you see in 30 second clips isn't everything and that, you know, like, that anyone can be put into glam and feel like, look great in glam, but that doesn't mean that everyone wakes up looking like that and there are filters on everything like that kind of. I hope that the authenticity starts to bleed through because I think that social media is an area that can be super confidence building and can also be detrimental to confidence. So that's. I would love to transition into talking about your work as a content creator because I think you're doing, I mean, mental health work on a macro scale when you're being this authentic in your content. But what, what is that journey into content creation been like for you and how do you kind of manage both confidence and mental health as you become so public online?

Amanda Steijlen [00:26:26]:

Yeah, it's been quite a journey even right now, like to be, you know, real and Authentic. Like, I've been struggling a lot with like, self image stuff. Like, it's hard when a lot of your days are spent looking at yourself and you're getting ready. You're looking at yourself, then you're recording and you're looking at yourself and then you're editing and you're looking at yourself. You're hearing yourself talk. It's very hard to not be critical of yourself when you're trying to get a good picture and looking at all of them to find the best image or to get the best clip of you talking. And that's something that I feel like needs to be talked about more and more because it's very difficult when you're looking at something so much to not critique it. And critiquing yourself is just not healthy.

Yeah. So as a content creator, I absolutely love what I do. I feel like it has been a huge blessing. I've made so many connections just building a community with people with disabilities. It's been an amazing journey. But it is something, you know, to think about is like maintaining that mental health balance.

Lily Newton [00:27:45]:

Yeah. And I feel like. Am I correct in stating that it feels like your social media growth is kind of. It's in like a growth moment right now. Like you're starting to do more brand deals, starting to get more followers. Like, this is kind of. You're on that journey right now. It's not an end at all.

So has that. Have there been any practices you have started to incorporate as you've like started to notice that, oh, this is affecting my self image or are you thinking about possible practices? Yeah.

Amanda Steijlen [00:28:19]:

So I feel like for. So I've been a creator for like three years now, which in the scheme of creators isn't that long. I feel like a lot of people have been YouTube creators for 10 plus years now. But it's been really fun and exciting to blow up. But yeah, it's figuring out these procedures, if you will, like, of maintaining mental health and when showing up online is your income. It's something that you can't necessarily put down all the time. Something that I've done is try to accept a first take. Like if I didn't say anything wrong and I just don't like the way my face looks, like that's not an issue.

The issue would be if I said something like that. I didn't mean to say, or I didn't hit the point for my ad or whatever it was, but just trying not to do so many retakes and don't zoom on your Face. Because if you take a magnifying glass, you're not going to like what your pores look like. That's just a fact. So those are some things I do. And then the unfollow button, I think it's great. If you need to unfollow me for your mental health, do it. Like, if I need to unfollow somebody for my mental health, I'm going to do it.

Like, protect yourself and your boundaries, your morals, all of that, by following people that you know resonate with you.

Lily Newton [00:29:54]:

Yeah. Curating a feed that puts you in a state of, like, joy or curiosity versus comparison is easier said than done, but also important and necessary. I'm. I'm pretty quick with that unfollow button as well. I'm also pretty quick with the block button. Somebody comes in my comments, wrong, blocked. This is my page.

Amanda Steijlen [00:30:18]:

My husband and I feel very strongly about. If somebody says something mean, you don't reply, block, bye, block.

Lily Newton [00:30:25]:

Not worth the time. Yeah, I certainly understand the looking like hyper fixating on your own self as you're editing your own work. Even with this podcast, when we first started, which was now, like, two years ago, I. I would painstakingly watch every episode and would, like, before they would come out, and, you know, I'd be leaving like a ton of notes in frame. Like, I repeated myself there, Cut that out or change that or do that. And I was just like, meticulously watching the whole thing, trying to get it to be something. And then I realized, like, I'm watching myself talk for almost an hour. There's never gonna be a time that I can do that and not have some stuff to say.

So now I, like, read through the transcripts. We'll kind of like do a quick watch of moments. I remember that I want to see how it came. And then I'm like, sure, that's who I am. And it kind of got to a point where now I'm actually, like, less critical of myself than I was before because I have such a deep acceptance of, like, yes, I know what my face looks like on screen. I know what I sound like because I've done it so much. But it's like, getting over that hump is hard.

Amanda Steijlen [00:31:43]:

Yeah. And that brings up a great point that, like, for people that want to do a podcast or that want to be content creators or are struggling, it does get easier when you keep those boundaries with yourself. Like. Like, it gets easier. There's going to be hard times, but the more you record and talk to the camera, the More you do podcasts and you learn how to speak. It's like practicing and nobody is perfect in, you know, things right when they start. And honestly, have you seen those videos with content creators that are like, posting their outtakes? Like, and those are big creators. So we're all doing this.

Lily Newton [00:32:28]:

Like. Yeah, that's, that's a funny thing because, you know, we're saying, like, it's okay to accept your first take, and that's a great practice if you are a content creator. Now, if you're a content consumer, you should be assuming that everything you're watching is the third or fourth take.

Amanda Steijlen [00:32:44]:

Yes.

Lily Newton [00:32:45]:

Because even the things that feel the most authentic oftentimes have been re recorded a few times. So.

Amanda Steijlen [00:32:53]:

And I mean, saying anything, like, if you're a creator and you're like, I love these mints so much, you'll be like, I said that so weird. And then you'll be, I love mints so much. I love these mints so much. Like, literally, you'll probably like pick something up like seven times when you're recording. So I think that, yeah, like you're saying, assume it's not the first take. It could be the 50th take. They could be at their wit's end. And that's what you're getting.

Lily Newton [00:33:22]:

Literally, you don't know what's going on behind the screen.

Erin Hawley [00:33:26]:

Yeah. When I do my videos on YouTube, I recorded it like 10 times and it makes my partner so mad for like, it was fine. Don't do it again. Well.

Amanda Steijlen [00:33:44]:

We're very self critical.

Lily Newton [00:33:46]:

Yes, very self critical. Well, you mentioned that you, through content creation, have met some really cool people. You do have an awesome friend. Group of other awesome disabled content creators, some of whom we've gotten the chance to work with. Can you talk a little bit about those friendships and also like the, the impact of that community on your own kind of view of yourself and also like, why how other people could prioritize that kind of friendship.

Amanda Steijlen [00:34:15]:

Yeah. Before I started content creation, I don't think I had one other friend with a disability. I take that back. I had one. I saw her in college and she saw me and we had a lab class and we were down the hallway from each other and we kind of like looked at each other and we just knew like, she, I could see she was like walking different and had something and she saw I was in a wheelchair and we like spotted each other and now we're friends. She's on the board of my nonprofit, but that was my one friend with a Disability, and I was 21 years old at that point. I had the MDA camps but didn't stay in touch with any of them. But now, through content creation, we have met some very familiar names for probably a lot of you watching these videos.

Hannah and Shane Burkhaw are some of our best friends. Squirmy and grubs on YouTube. And colon charisma. We met through Hannah and Shane.

Lily Newton [00:35:18]:

Yeah, the six of you guys are like a power friend group.

Amanda Steijlen [00:35:23]:

We love them so much. We actually got to go last year to the White House together for the Americans with disabilities act celebration, and it was just such a beautiful moment to be surrounded by so many people with disabilities. And then after that, we went out to dinner with the six of us, which was, like, one of the first times we've, like, really hung out, like, intimately with all six of us together. And we were sitting at the table and we were just like, it is so nice to just show up who as. Who we are. Like, we. They're all like, our spouses are all caregivers for us. And it was the first time that, like, we felt very comfortable with who we were around.

And it just feels like a breath of fresh air when you're around people that just get it and you can just be yourself. We're actually going up to Minnesota, see our little group, and we're going to be hanging out with them for a month. We're very excited about it. I think that for people that want to start that kind of community for themselves, it can be hard because a lot of times we don't drive. Like, I don't drive and you don't get out. And how do you go find a disabled person and befriend them? Like, I know we all, like, give the wheelchair wave, you know, but, like, how do you find your community, especially if your disability is not, like, seen physically? Like, how do you spot those people? And I think the one thing that social. Well, one of the things that social media is good for is finding your community. And I think reach out to people, like, DM them.

Like, I get so happy when people DM me and try and start a friendship that have things in common with me. And I think people are shy, and I'm like, no, don't be. Like, please, please message me. And one other way, which leads into a really good segue for talking about. This is Hannah and Shane and my husband Michael and I have started a business that we're launching very soon called Sunny side Up. And it's going to be coaching so like Shane will talk to people about book writing and Hannah and Shane will do groups on like caregiving and relationships. And same with me and my hu in and we're going to do coaching and then we're going to do support groups and we're going to have support groups with like different disabilities so that people can network in their group or people with disabilities that are entrepreneurs or whatever. And so stay tuned for updates on that kind of stuff because it's a great way to connect.

Lily Newton [00:38:15]:

Yeah, that's a great way. Any kind of like group designed for that I think is because you're going to meet people who not only are like minded and understand your disability, but also are like whatever group it is you choose, whether it's an art class for people with disabilities or a support group on caregiver relationship. They're going to find people who have other things in common with you because they chose to go to that group. But I think, yeah, I like the active portion of what you're saying of like that you know, you have to do some stuff to find that community, even if it's virtual. I think that's important to note because sometimes, especially when looking on social media you see a group of like six best friends that, that seem like, wow, they've known each other forever. And it can feel like, oh, if I don't have that, maybe I never will. And it's like, no, that's not the case. You didn't even, you hadn't really hung out with these people over a year ago.

And it's never too late to find your people. And it's also not like a given that you'll naturally have your people. Sometimes you have to seek it out. You gotta send that DM and it's worth it.

Amanda Steijlen [00:39:23]:

Yeah, absolutely. And like you're saying like this isn't like I've had these close friendships for 10 years. Like we've been friends with Hannah and Shane for probably three and Cole and Charisma. I think we met them like two years ago. But like these are newer friendships, you know. And I think that in life, you know, friends do come and go. Like there's never a point where it's like too late to make a good friendship. The friends that like have those things in common with you and are genuine people just click.

Like you just know. And I think that a lot more people need to, you know, put themselves out there a little bit. Like you're a good person, people are going to like you. Try.

Lily Newton [00:40:08]:

Yeah. You know, Shameless plug. If you're looking for like, you. You're. You're deeply craving that community. And you happen to be someone who plays video games. The ES gaming community through Easter Seals is pretty awesome. Aaron, you could talk about it more than I can, but there's a great community of people.

Erin Hawley [00:40:27]:

Yeah, I mean, if you're into gaming, to check it out, we have a Discord server where we chat about games and kind of building that community. We're really just trying to combat isolation because gaming is a really great way to connect with people online for sure.

Amanda Steijlen [00:40:51]:

And I think.

Lily Newton [00:40:52]:

Blocking piece. No, you go ahead.

Amanda Steijlen [00:40:55]:

I was just going to say that gaming specifically is really great too, because there have been a lot of adaptive things that have came out for playing games. And it's a lot of like, mindfulness for a lot of people. Like playing even like Animal Crossing or whatever, which I like, is just very therapeutic and calm and it's a world that's not mine.

Erin Hawley [00:41:17]:

I hear that completely. I love Animal Crossing.

Amanda Steijlen [00:41:21]:

Have you played Disney Dreamlight Valley?

Erin Hawley [00:41:23]:

I have, yeah.

Lily Newton [00:41:25]:

I love.

Erin Hawley [00:41:25]:

I haven't played anything, but I do. I used to play like every single day. I was obsessed.

Lily Newton [00:41:34]:

Yeah, gaming's a great way to meet. I mean, doing stuff together is a great way to build the foundation of friendships. Like, doesn't have to just be. I want to be your friend. Like you can just get to know people. But I think. I think friendship is so important and is a. I like that we went through those five needs at the beginning of this episode because, you know, so many of those are related to even just like Easter Seals pillars.

Lily Newton [00:41:59]:

Talking about community being so important and not just as like a fun thing, but as a literal social determinant of health. Your community is very, very important. We're. We're running out of time a little bit. So I want to shift gears a tiny bit. Because you have worked in educational spaces. Correct? What my question is, what are your kind of. What are your thoughts on the future of mental health care in, like, role in educational spaces? But also I just want to hear your thoughts on education as it stands for people with disabilities right now.

Amanda Steijlen [00:42:42]:

Yeah, I think that the climate of the world has been changing a lot recently. For me. I had a very positive experience with going to school and receiving accommodations. I think that for those accommodations, there are some barriers as far as you need a specific doctor's note from your neurologist. And sometimes it's hard for people to get an appointment to your neurologist and get a diagnosis. Some people are not officially diagnosed. For me, I Was. But I also see the other side of it for people that try to get accommodations and don't have a diagnosis and then they don't want to provide accommodations for that.

The school that I went to provides free mental health care, so that is a huge thing for college students. And I think that there are a lot of schools that do incorporate mental health care even on lower levels too. Like lower levels of education. But I think that in my opinion, there needs to be more access to mental health care in educational like ways. As far as, like, if we're teaching home ec, why are we not teaching, like, about how to take care of your mental health?

Lily Newton [00:44:10]:

Totally.

Amanda Steijlen [00:44:12]:

And then resources to access the mental health care when you need it. There's a lot of struggle with paying co pays to get mental health care. And. Yeah. So those are just some of my thoughts that I've experienced and I'm aware of and, you know, trying to advocate for.

Lily Newton [00:44:36]:

Totally. And I, I think one that's awesome that your school had free mental health care available. Like, that's so. I wish every school ever at all age groups had that. But I also think there's a layer to like, sharing the need and the skills of mental health care with students who specifically are on a special education track. In that I think that sometimes, weirdly, because mental health is an aspect of disability, especially when we get into diagnosable mental health illnesses, but it, it feels almost separate sometimes where it's like, well, you have this disability, so we're not going to talk about anxiety, depression, grief, etc, because you've already got this big disability. So. But I think it's really important that no, like, mental health care is important to everyone, no matter your health status in other areas of your life.

Amanda Steijlen [00:45:28]:

Yeah. I think every school and every workplace should at minimum be having seminars on mental health where they take, you know, professionals like me or, you know, somebody else, but like to go in, speak on mental health, give them a resource so they know, like, where to get mental health services. Because it's very confusing for a lot of people on how to actually start. And it's easier than you may think. You know, I think that a lot of people don't understand that. And yeah, just providing the education and.

Lily Newton [00:46:06]:

Experience which, if you're listening to this episode and you're like, man, I would like to get started. I don't know how this. We're. We're plugging stuff today. You're gonna have to forgive us, but we actually did an awesome collaboration with Amanda, already sharing Easter seals, collaborated with Mental Health America to create a free screening tool. And it's completely anonymous. It's free. And you go.

Lily Newton [00:46:31]:

You can find it online at easterseals.com mental health. And it's a really great place to. Because you can get. You can, you know, take the screening, be empowered with the language that you can bring to a doctor, a therapist, et cetera, to start your journey. And sometimes just even being able to get answers yourself and understand how your own brain is working can be so empowering. So if you're looking for that, you're listening to this episode going, okay, but how that's one resource available to you at this very moment.

Amanda Steijlen [00:47:02]:

Yeah, it's very validating to realize that your symptoms and what you're feeling is not something that you should have to normalize and something you can work on. So I think that tool is amazing and a great thing to bring to a therapist to talk about.

Lily Newton [00:47:19]:

Yeah, well, this is. This has been so fun. I could talk about. I mean, having you on is so exciting. Having someone who can talk about all aspects of disability inclusive of mental health is just. It's just like dream come true. So thanks for being a part of this and having these conversations with us. I want to shift gears a little bit because this episode is the first episode where we're doing a news segment.

I don't know if there'll be music here, but if there's not, this is our new segment. It's called Know the Facts because we're realizing that not that many people know. Sometimes when you are disabled, it can feel like you kind of live in this, like, microcosm of understanding about disability. And then you realize how much non disabled people still are relying on assumptions about disability or misinformation. So we have asked all of our guests from here on out to come on with a fact about disability that can maybe feel like common knowledge to us, but maybe isn't common knowledge to you as a listener. So, Amanda, what is your facts? And can I, in saying it, can you say know the facts and then your facts?

Amanda Steijlen [00:48:30]:

Okay, know the facts. I'm choosing one of the most basic facts in my opinion. But maybe not to everyone. One in four people has a disability. That is a huge population, like, and with that, you can become disabled at any time. That's my fact.

Lily Newton [00:48:53]:

That's a great fact. It's such a good fact because it's already such a massive amount of people. And yet disability matters should matter to you at all times whether you're disabled or not, because you can become at Any moment. That's why Erin and I specifically, like, we avoid the term able bodied and we say non disabled because you're just, you're just a prefix away from becoming disabled at any point.

Amanda Steijlen [00:49:19]:

Find themselves having a disability in their lifetime.

Lily Newton [00:49:22]:

Yeah. If you are privileged enough to live a long life, you will. Disability will come knocking. Don't be afraid of it. It's part of life.

Amanda Steijlen [00:49:29]:

It's fun. You should care about it now because it's coming.

Lily Newton [00:49:32]:

Yeah. The more we build the world to be accessible for everyone, the more it is accessible for everyone. Would you look at that? I think that 1 in 4 fact is so important because we're not that far out from the ugly laws. And if you don't know what I'm talking about when I say ugly laws, don't worry. Google is available and the ugly laws kept disabled people out of the public eye. For real. If you don't know what I'm talking about, you should Google it and learn about it. It's a really important part of.

Lily Newton [00:50:00]:

It's a dark and important part of American history. But it might seem to you that disability is not a prevalent experience in the world. But that's purposeful and because disabled people were separated, isolated, hidden even. And it is really important to understand that 1 in 4, and likely it's 1 in 4 people that you don't even realize like you, you might be in the room with four people and not know because many disabilities are non apparent. And yes, everyone knows somebody.

Erin Hawley [00:50:35]:

Everyone knows somebody that has a disability even if they don't realize it yet.

Lily Newton [00:50:40]:

Oh yeah, absolutely. And yeah, disability is not a dividing thing where it's like, oh, that just matters to disabled people. No, disability connects everyone actually and is a, a great grounds for understanding and building something that works for everyone. So I appreciate your fact, Amanda. One in four Americans have a disability and you can become disabled at any time. Those are really important facts.

Amanda Steijlen [00:51:08]:

Yeah. Thank you.

Lily Newton [00:51:09]:

So before we end you, you mentioned your new projects. What else do you have going on right now and where can people find you if they want to follow you on social or.

Amanda Steijlen [00:51:21]:

Yeah, you can find me at. @ Amanda. And then Steijlen is my last name. S T E I J L E N. Very hard last name. It's Dutch. Thank my husband's family.

Lily Newton [00:51:35]:

Don't worry, it's. It's linked in the description below.

Amanda Steijlen [00:51:38]:

Yes. And we are styling on YouTube. We do a lot of travel stuff and we're doing a lot more accessible travel stuff. Working with tourism board and showing different accessible things to do in different cities because there's always something accessible to do. It's just a matter of finding it. Yeah. Just growing as a creator, hopefully. All thanks to my audience.

I always say I would be nothing without, you know, my followers, like, my community that we're building. Look out for Sunny side Up and those support groups to be starting very soon. And yeah, if you live in Florida and are looking for mental health services, we're doing plugs here, so. True Bloom Therapy. You can go on there and literally just book an appointment and it's very easy. That's all you have to do. Just go on the website, start appointment, that's it.

Lily Newton [00:52:33]:

If you're in Florida, you better do that right now, because if I were in Florida, I'd be signing up immediately.

Amanda Steijlen [00:52:39]:

Yeah, I love this. Thank you.

Lily Newton [00:52:42]:

Yeah, that. And so excited to hear more about Sunnyside up as it comes out. We'll be following along. I think that'll be a great resource for a lot of people to have. Thank you so much for coming on our show, for being open, for sharing your time with us. I just. I feel like you could just hang with Aaron and I any day. Like, you just fit in so well.

Lily Newton [00:53:03]:

We really enjoy spending time. After our pre production call, we were geeking. We were like, this is gonna be so fun. Like, walk.

Amanda Steijlen [00:53:10]:

Yeah, I loved our pre production call. I was like, yeah, we can be friends for sure. Like, we. We just mesh and like showing up here and just being so real and stuff. It's connection and this is exactly how you form these friendships. So I really appreciate you giving me the space to talk on here and share my story and help, you know, with the advocacy work that you guys are doing.

Lily Newton [00:53:32]:

Well, thank you so much.

Erin Hawley [00:53:34]:

This is a great episode.

Lily Newton [00:53:36]:

Yeah, this is so great. And, you know, if you're listening to this, I. I hope you really heard the things that were said about mental health care, and I hope you're taking care of yourself today and every day. I'll close with Happy Disability Pride Month. It is truly an honor. And my biggest disability pride comes from just getting to be a part of this community because it's filled with just the coolest freaking people. Like, look who I get to share the screen with right now. This is incredible.

So Happy Disability Pride Month. Thank you all, listeners. Thanks for tuning in. Just as Amanda said about her followers, we're nothing without our listeners. So we really appreciate you tuning in. Erin, I love you. I love hosting the show with you.

Erin Hawley [00:54:22]:

Yes, me too.

Lily Newton [00:54:24]:

And tune in next time for another episode of Everything you know about disability is wrong.

Erin Hawley [00:54:34]:

If you liked what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton [00:54:42]:

Thank you to our listeners. And as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley [00:54:54]:

And I'll see you next time for another episode of Everything you know about Disability is wrong.