Episode 2: Disability Belongs in Friendship

Cami Marble  0:00  
Welcome to the Disability Belongs Podcast. [violin music] Just a quick disclaimer as we get started that the opinions expressed in the Disability Belongs Podcast do not necessarily reflect the opinions of CFILC, its member organizations or YO! Disabled and Proud. And with that out of the way, let's get on to the episode!

Our guest today is studying sociology and hopes to work in Disability Justice. He is one of my fearless YO! Disabled and Proud co-leads, and he has done a ton of work behind the scenes on this podcast. I am so excited to be talking today with Evan Milburn. Welcome, Evan.

Evan Milburn  0:40  
Thank you, Cami. Thanks for having me! I'm a little salty I'm the second one, but that  was mainly my fault. I had a family obligation to attend to for the first episode.

Cami Marble  0:53  
Yeah, I would say second is the best but I don't want to offend our our first guest. Yeah. I guess we just shouldn't, shouldn't have a hierarchy. Maybe that's the deal. Yeah. So

Evan Milburn  1:06  
anyways, 

Cami Marble  1:07  
How did you get involved in YO! Disabled and Proud?

Evan Milburn  1:11  
We have an County Commission on Disabilities, where there's about 24 or 21 of us, I think, I think somewhere around there, who advocate for people with Disabilities within San Mateo County, which is where I live. And that's how I was orginally met my supervisor, my friend and supervisor, Ben McMullan. I made clear to him and one of the board members for CID that I wanted to do this as an occupation, so they brought me on and six months in, I joined, I met Vanessa Cuellar, who was the original Youth Statewide Organizer. And then I worked with Russell for a little bit when it was just me and him. And then yeah, no, and then it took off from there!

Cami Marble  2:08  
And the rest is history and Tatum and I eventually joined you right? 

Evan Milburn  2:13  
Yeah. 

Cami Marble  2:13  
What have you enjoyed about working as a part of YO! and what are some of the opportunities that it's brought about for you?

Evan Milburn  2:23  
Definitely the friendships for one, and no I wasn't paid to say that by Tatum or Cami. But I do feel like we created a bond both just while we while we've been working and just outside the whole YO! program. It's nice having that bond and connecting with you guys.

Cami Marble  2:47  
It's been so nice to get to know you too Evan!

Evan Milburn  2:50  
Nice getting to know you guys and being able to do stuff like meet Emily Ladau, meet Alice Wong and meet Haben Girma and meet all the speakers we've had just being able to do some of the opportunities we have done, even being on a podcast! That's a first for me!

Cami Marble  3:09  
I was going to say that this is the first podcast I've been on but that's not true because I definitely hosted the other episode of this podcast. 

Evan Milburn  3:16  
I'm pretty sure you were on episode one. (laughs)

Cami Marble  3:19  
Me too, but that's okay. I think it's really funny that Evan and I spend hours a week together virtually on Zoom or FaceTime or texting. But we've never actually met in person. Yeah, hopefully someday soon that will happen!

Evan Milburn  3:39  
But we should talk about the first time I met Tatum. I'm sure she'll be okay with that. 

Cami Marble  3:45  
Oh, yeah! 

Evan Milburn  3:47  
We have to talk about this because, I believe, I was in Virginia for family wedding. Nice to see everybody, nice to see family but I thought, since one of my best friends, that I haven't actually met in person at that point yet, figured why not meet her in person. So I haven't done any solo trips by myself. I haven't traveled. The only place I've really gone by myself was an eighth grade graduation trip and maybe a night over with my grandparents, but that was long ago and far away. So this was my first big trip and I was excited. I wanted some independence, so yeah, no, I went down to North Carolina. I believe the first thing she said when she saw me was "Hi, Evan. Wow, you're so tall".

Cami Marble  4:44  
Yeah, that was the first thing she texted me a picture of the two of you and I was like, Wow, Evan's tall. You really don't get, you really don't get a sense of how tall someone is when you only know them virtually.

Evan Milburn  4:55  
To be fair, we're on Zoom. 

Cami Marble  4:56  
Yeah. The top half of them on Zoom is all you see.

Evan Milburn  4:59  
We're all, well hopefully we're all sitting down. I don't know, you could be sitting on like one of those yoga balls thingies and be bouncing up and down. But no, yeah. And I texted her sister. I'm like, "Hey I finally met Tatum in person!" Because I knew her sister from helping out with a previous birthday stuff and we've talked once, not super often, but we've talked before and she's like, "Oh my God. Wow. You're so tall!"  It was cracking me up that you all three of you guys had almost the exact same reaction. I'm like, yep. 

So yeah, that's how I met Tatum! 

And I hopefully, if all goes well and COVID is not a butt, I'm trying to get down to San Diego partly so I can meet you, even if its waving through a window, and partly so I can meet the Normal Heights community. But yeah!

Cami Marble  6:11  
Someday soon we'll actually get to meet in person, hopefully, and we'll have another...I guess we'll have to update the podcast once we meet and have the story of how meeting in person went. So stay tuned for a future episode of the podcast, to be determined when that will be!

So I guess now switching gears a little bit. What was it like growing up in school as a Disabled person?

Evan Milburn  6:37  
Um wow, it was definitely well, rough because I was, for those of you who can't see, I am obviously physically Disabled. I have, I have Apert Syndrome. Apert Syndrome. So it's a cranial facial disorder, so my hands and feet are webbed, my head is, I don't know how to describe it in medical...I don't know how to describe it in medical terminology, but it's not normal. But I'm not complainging about it. It is what it is and have come to accept it. Actually, part my whole journey to Disability advocacy was through accepting my Disability kinda. Actually, through my school seventh grade science class, which I'd love to talk to you about at some point.

Cami Marble  7:51  
Why don't you tell us more about seventh grade science class?

Evan Milburn  7:54  
Yeah. Well, seventh grade was, that was probably early teens, if that. Maybe 12?

Cami Marble  8:05  
Yeah, you think what are you were like 12 or 13?

Evan Milburn  8:08  
Yeah. If that? Yeah. So I was always curious to know what I had because obviously...All my life always funny looking, up to that point, I was the funny looking kid in class. I was the guy who was being called various things. Some of them were, some of them were lets just say not poltically accurate.

Cami Marble  8:38  
Yeah, middle schoolers, especially, middle schoolers are mean.

Evan Milburn  8:42  
It was more in high school that was my experience. It was like my friends have said high school is the best time of their life. No, no, it was it was rough. 

But now in seventh grade I had a questions and we were learning bout genetics I was getting curious on what I had and so I came to him. I grew close with my teacher. He understood that I kind of was having questions. So he allowed me to do a PowerPoint on Apert Syndrome, which is what I have. But yeah, no since then..and then he let me, you know, present it to the rest of the seventh grade class and that kinda took off from there.

It became like everywhere I went I brought this PowerPoint. I updated it a little, changed some stuff around. I began presenting places, presenting it to a college class when I was still in high school. But because my only sister at the time was a special ed major. So this was eons before Zoom. It was back when Skype was still around. Remember the Skype days, Cami?

Cami Marble  10:04  
Oh, yes. Skype days were the days. I remember Skyping my grandparents.

Evan Milburn  10:12  
Yeah, so I got to virtually be projected on Skype, presenting it with my sister. And it was kind of cool. 

Cami Marble  10:22  
Yeah, that is!

Evan Milburn  10:23  
Little did we know we would  have Zoom and I'd be doing his future but like, I thought that was definitely a precursor.

Cami Marble  10:34  
To your advocacy?

Evan Milburn  10:36  
Yeah, I was telling people all about my story. And then it came to high school and getting kind of accommodations for me. 

I also saw some not so pleasant things in my first high school. I went to a small charter at the time. I saw some stuff that still haunts me today. But a lot bullying a lot of stuff. It wasn't just me. It was bad enough that I was bullied, but I could kind of fight back. It was people being bullied that couldn't really fight back or defend themselves. Does that make sense? 

Cami Marble  11:28  
Yeah. Yeah. 

Evan Milburn  11:30  
Like they were. They're really bright kids. They probably rivaled me in IQ level at the time. They were probably brighter than half those punks that were bullying them, but was also it was just hard watching because it was like every day I watched it, and I'm telling another teacher. And teachers wouldn't believe me and weren't doing anything. So that was like one of my deepest regrets with leaving. 

I eventually had to transfer out of that school just because it wasn't a good fit. It was either that or take ninth grade over again. So I choose to transfer out. I didn't want to be there. I didn't think getting held back was necesarily the right option for me. But yeah, that was the beginning of my advocacy. That, birthed the beast inside of me. I've been advocating for others and advocating for myself and trying to get accommodations.

Cami Marble  12:49  
Oh, that's a really interesting story. Thanks for sharing! When you, when you were doing research on Apert Syndrome in your seventh grade science class, did you already know that was your diagnosis? Or how did that work?

Evan Milburn  13:02  
Kind of. My mom, luckily my mom is a physican assistant which is, the most relevant thing I can compare it to is a nurse practitioner. 

Yep.

So there, it's somewhere between that and doctor. Don't ask me what the whole medical criteria is, I have no idea.

Cami Marble  13:25  
That'll be another episode, I think. The entire medical system? I don't think we can fit that one in this episode.

Evan Milburn  13:32  
Yeah, no. But yeah, no, she kind of told me what I had. I started doing research on it just because I was curious. You don't hear it often. You hear about like Down Syndrome a lot. You hear about Autism, a lot. You don't hear about someone having Apert Syndrome a lot, so that was another cool thing. So that was a cool project! 

And then, actually, it was especially cool, because when I came to YO!, I found out I wasn't the only, I wasn't the only person with my Disability, to have, to be a YO! volunteer. So I got to meet the other...I've gotten to exchange text messages and somewhat e-meet the other person with Apert Syndrome.

Cami Marble  14:28  
Wow, that's so cool finding that connection.

Evan Milburn  14:30  
We have somewhat of a friendship, but yeah, it's kinda cool!

Cami Marble  14:34  
Wow. So I know we've talked a little bit about how you've had quite a few surgeries. I think you said 16 surgeries in your life?

Evan Milburn  14:44  
Yeah. 

Cami Marble  14:46  
And I know some of them were long before you have memory of them. But what was that like having surgeries and being so involved? I guess having like a medical aspect to your life as you were in school?

Evan Milburn  14:59  
It was scary. It definitely still is. I just got diagnosed with functional tremors in this and so pretty much if my legs are at an 90 degree angle they start shaking uncontrollaby and I can't cant stand up at times. So that's been fun. But yeah no it's it's been interesting ride in terms of medically speaking just having to deal with surgeries. I'm pretty sure I missed both my junior and my senior proms because of either yeah because of surgeries. One was a midface I had to have my second midface advancement. I had one when I was really young probably four or five an outward distraction device or Halo they call it. And so there was that and now fast forward to about 16, or 17 there was another one it was a two-parter. So one was in December. One was yeah, in December, and then the other one was...The first of part was in December where they put the things in to help expand my my skull on my facial features a little bit, and hopefully give me more airway. So that helped. 

And then, yeah, that that caused actually another couple surgeries on top of that, unfortunately. Well because my, I have hydrochephalus as well, which is too much cerbreal spinal fluid in my brain, so I have a small tube [or shunt] that runs from my brain to my lower extremities and they have little tiny holes in them, and if that gets clogged up, pretty much, I get really bad headaches. And so unfortunately I ripped my, I ripped out my shunt, that was one of them post up. And so I, I had a three weeks, my junior year, I think, might have been my senior year was a three week stay in the hospital. So that was that was fun! It wasn't one hospital either. It was I had to get transferred from one Kaiser to another Kaiser back to the orginal Kaiser. So yeah, I have a lot of stories about that.

Cami Marble  18:05  
I would imagine!

Do you have any, okay, this is maybe a really weird question, but do you have any like pre-hospital/pre-surgery rituals? Like I always, I tend to go to Target right before a hospital stay and get some new pajamas for the hospital. Do you have anything cool like that?

Evan Milburn  18:24  
No, nothing cool like that. Usually no nothing cool like that.

Cami Marble  18:32  
I think maybe you should start some.

Evan Milburn  18:34  
Maybe I will. Now that you have Target, I feel like I should start some.

Cami Marble  18:39  
Alright, some people do like a last supper, like a big meal right before surgery, or not right before surgery but right before you go to the hospital. 

Evan Milburn  18:45  
There's a couple times I've done that. I'm really bad with traditions. I don't fall, I'm not a consistent person. I have that personality type that takes it to like do something every single day.

Cami Marble  18:59  
Okay, fair enough. I guess that wasn't the most exciting question then. Do you have any, would you have any advice for your younger self going through those surgeries?

Evan Milburn  19:07  
Oof, hang in there! Yeah hang in there pretty much, oof. Pretty much try and stay positive. It's also like going through the surgeries, I don't want to say is the easier part but there's also a whole nother can of worms. This is the mental aspect of it, which I'm sure you can agree with. 

Cami Marble  19:41  
Yeah. It's not just the physical. 

Evan Milburn  19:43  
It's the stuff we don't really talk about as a society. I don't mean to put you on the spot, but I know I definitely got diagnosed with depression because of my medical stuff.

Cami Marble  20:00  
Yeah. Yeah. Do you want to talk more about your mental health? I know that's something that, again, we don't really talk about as a society, but it's so important to bring up.

Evan Milburn  20:11  
Yeah. Yeah, no, I'm, I'm pretty open about it. It's one of my things I like to advocate on just because no one talks about it. So I've had depression for 12 years now. Maybe more. Well, yeah. 

Cami Marble  20:35  
12 plus or minus. 

Evan Milburn  20:39  
I just had to think about that. I've mentioned before and but yeah that sounds about right, I was somewhere in middle school at the time, probably when I was first. I wasn't officially diagnosed until like, for loads of medical reasons, loads of reasons until probably High School. Just because, just loads of personal reasons and stuff but it was definitely not, that's what I can pinpoint. Looking back there's definitely times where like, yeah, yeah that's definately depression. 

Cami Marble  21:15  
So since we've talked a little bit about mental health, I'm going to steal one of our speaker series questions and ask as an activist, what forms of rest and self care have been helpful to you? And how has your Disability impacted your understanding of self care?

Evan Milburn  21:32  
Yeah, that's my it's still evolving for me. I think the whole term of self care. Probably just because it looks different everybody. I think you'd agree with that. 

Cami Marble  21:48  
Yeah, definitely. 

Evan Milburn  21:49  
It definitely not, It's not like a one size fits all. 

Cami Marble  21:57  
Yeah, I feel like.

Evan Milburn  21:58  
I hate to be that cliche but it's definitely not one size fits all.

Cami Marble  22:03  
Yeah, I feel like there's this idea that self care is like face masks and bubble baths. And, for me, at least, face masks and bubble baths would like make me unable to breathe. So that's definitely not how I interact with self care! 

Evan Milburn  22:21  
Wait, bubble baths would make you not able to breathe?

Cami Marble  22:23  
Yeah, because I'm super allergic to scents. So, any kind of scented soap or anything like that.

Evan Milburn  22:32  
What if you got unscented bubbles?

Cami Marble  22:34  
Yeah, maybe unscented bubble bath. But like an unscented bubble bath is not my personal choice of self care. I like like, creating things as fun for me. So like art. I also think that cleaning my room is self care and anyone can fight me if they don't agree. But.

Evan Milburn  22:53  
Wait, aren't you the person that says making your bed is ableist?

Cami Marble  22:58  
Oh, yes, yes, I think.

Evan Milburn  23:01  
I feel I feel like that there's some irony there.

Cami Marble  23:03  
Yeah, bed making: an ableist concept. Like, why? Why do we need to make our beds? For one I, now, I'm like taking over this podcast, you started interviewing me! But while I'm on the soapbox, I will, I will be here. One. The whole concept of making your bed like the idea is that you're not going to get back into your bed during the day, which like, naps are the best, especially as a Disabled or chronically ill person. So like, why make your bed? Secondly, making your bed just requires so much effort, like bending down and standing back up is really hard for me. For a lot of like wheelchair users it's not even really feasible. So therefore, my soapbox for this episode of the podcast is that making your bed is an ableist concept. And now Evan, I'm gonna throw it back to you. What are your favorite forms of self care? What is self care like for you?

Evan Milburn  24:00  
I hang out with my dog, Walter. I just got him on my birthday. He's my first dog ever so I'm really stoked about that.

Cami Marble  24:09  
He's adorable. 

Evan Milburn  24:11  
Yes, he's a bernedoodle puppy. Oh, I'm sure if you follow me on Instagram. There'll be pictures of him. I'm trying to think now what I have.

Cami Marble  24:26  
Maybe we will have to post a picture of you and Walter. When we post the podcast, we'll post a picture of you and Walter.

Evan Milburn  24:34  
Yeah. So yeah, no hanging out with him is mainly my form of self care, either going for walks or going to the local dog park when it's open. Well, yeah, no I think that self care. Definitely listen to music any kind from...I'm not into the top forty's as much. I'm into the people that no one really knows about. 

Cami Marble  25:04  
Who's on your playlist?

Evan Milburn  25:11  
Vitamin String Quartet is definitely one of them. Piano Guys is definitely one of them. I like Bruce Springsteen even though he's probably popular for older demographics. Springsteen, Petty, The Beatles. Pretty much anyone as long as they sound good.

Cami Marble  25:35  
That's quite the list! I like it!

Evan Milburn  25:37  
I have a fairly eclectic tastes! 

Cami Marble  25:39  
Yeah.

Evan Milburn  25:39  
I was reviewing the suggested playlist for me and it was like anyone from Jeremy Camp, who is a Christian singer, to like Jay-Z to Springsteen to Train. It was very eclectic! I think I get that mostly from my sisters. I grew up listening to their music and I've adopted some of it and modified some of it. So, yeah!

Cami Marble  26:12  
Yeah. Okay, so I think we're getting towards the end of our time here on the podcast together. Before we wrap up, 

Evan Milburn  26:20  
Seriously? That's it?

Cami Marble  26:21  
the name of the podcast is Disability Belongs. What does Disability Belongs mean to you?

Evan Milburn  26:28  
Disability Belongs means that we, we as the Disabled Community belong in every space that abled people belong in, for lack of a better term. We are often left not with a seat at the table and I feel like that needs to change just because we're such a large minority anyone can be a part of our minority, no matter their demographic, race, demographic, age so on, so forth. So, yeah!

Cami Marble  27:13  
Thanks, Evan. It has been so wonderful to talk with you tonight. I can't wait to publish this episode. 

So great to hear from Evan today on the podcast! If you want to check him out on Instagram you can do so @a_man_apert_of_2_worlds. A man apert of two worlds, a good good word play there. You can check out his account there. And while you're on Instagram, go ahead and give the podcast account a follow as well. @disability_belongs_podcast And these links will also be in the show notes as well. 

Thank you so much for choosing to listen to the Disability Belongs Podcast! This podcast would not be possible without the support of the California Foundation for Independent Living Centers, and the YO! Disabled and Proud program. Thank you to my entire team at YO! We can't wait for our next episode and we hope you'll join us then. [violin music]

Transcribed by https://otter.ai