1 00:00:00,040 --> 00:00:02,720 Most of us move through life without thinking about the 2 00:00:02,720 --> 00:00:04,720 things that make our day possible. 3 00:00:05,040 --> 00:00:07,880 We walk into a building and assume there will be a way 4 00:00:07,880 --> 00:00:11,000 inside. We make plans without wondering 5 00:00:11,040 --> 00:00:13,320 if the space was designed with us in mind. 6 00:00:13,840 --> 00:00:16,720 We expect the world to work because most of the time it 7 00:00:16,720 --> 00:00:19,240 does. For Jenna Udenberg, that has 8 00:00:19,240 --> 00:00:22,480 never been a guarantee. Diagnosed with juvenile 9 00:00:22,680 --> 00:00:27,400 rheumatoid arthritis at age 7, Jenna's life quickly became a 10 00:00:27,400 --> 00:00:31,040 series of challenges that most people will never have to face. 11 00:00:31,360 --> 00:00:34,160 Chronic pain. Multiple joint replacements. 12 00:00:34,400 --> 00:00:37,000 More surgeries than most of us can imagine. 13 00:00:37,320 --> 00:00:41,040 Constant adaptation to a world that was not always built with 14 00:00:41,040 --> 00:00:43,600 her in mind. What struck me during this 15 00:00:43,600 --> 00:00:47,120 conversation wasn't just what Jenna has endured, it was how 16 00:00:47,120 --> 00:00:49,080 much I realized I take for granted. 17 00:00:49,560 --> 00:00:53,840 Listening to her describe navigating schools, hospitals, 18 00:00:54,200 --> 00:00:59,280 public spaces, careers, and everyday life made me stop and 19 00:00:59,280 --> 00:01:02,800 think about how easy it is to complain about inconveniences 20 00:01:03,240 --> 00:01:06,480 while never truly understanding the barriers that other people 21 00:01:06,480 --> 00:01:09,480 face every single day. This conversation is about 22 00:01:09,480 --> 00:01:12,400 resilience, but not the kind we usually talk about. 23 00:01:12,800 --> 00:01:16,600 It's about dignity, independence, accessibility, 24 00:01:16,960 --> 00:01:20,240 self worth, and the difference between simply surviving 25 00:01:20,240 --> 00:01:23,360 difficult circumstances and building a meaningful life 26 00:01:23,360 --> 00:01:27,600 despite them. Jenna shares her journey through 27 00:01:27,600 --> 00:01:33,560 disability advocacy, education, leadership, and the creation of 28 00:01:33,560 --> 00:01:37,160 Above and Beyond with You, an organization dedicated to making 29 00:01:37,160 --> 00:01:39,440 communities more accessible and inclusive. 30 00:01:39,920 --> 00:01:43,520 More importantly, she challenges us to think differently about 31 00:01:43,520 --> 00:01:46,840 what normal really means. Because maybe the goal was never 32 00:01:46,840 --> 00:01:49,520 to fit into someone else's definition of normal. 33 00:01:50,160 --> 00:01:53,360 Maybe the goal is to create a world where everyone has the 34 00:01:53,360 --> 00:01:55,680 opportunity to fully participate in it. 35 00:01:57,560 --> 00:02:01,600 Welcome to No One Is Normal, the podcast where real stories 36 00:02:01,880 --> 00:02:03,800 remind us that none of us are alone. 37 00:02:04,280 --> 00:02:10,199 You can also visit the website www.bradhhill.com or 38 00:02:10,240 --> 00:02:16,440 www.nooneisnormal.co for resources, updates and future 39 00:02:16,440 --> 00:02:20,640 podcast episodes. I am Brad H Hill and each week 40 00:02:20,640 --> 00:02:24,080 we talk about the messy, the complicated, and the deeply 41 00:02:24,080 --> 00:02:27,560 human moments that shape us and remain in our memories. 42 00:02:28,040 --> 00:02:30,040 I am not here to tell anyone how to live. 43 00:02:30,360 --> 00:02:33,760 I am here to offer the stories, the insights that made me 44 00:02:33,760 --> 00:02:37,080 realize that no one is normal, including me, because healing 45 00:02:37,080 --> 00:02:40,880 starts when self honesty begins. Hi, Jen. 46 00:02:40,880 --> 00:02:42,160 Thank you for coming on the show today. 47 00:02:42,920 --> 00:02:45,640 Hey, Brad, thanks for having me. So growing up, when did you 48 00:02:45,640 --> 00:02:48,120 first realize your life experience was going to look 49 00:02:48,120 --> 00:02:49,640 different than other kids your age? 50 00:02:50,320 --> 00:02:51,920 Great. First question. 51 00:02:52,200 --> 00:02:55,440 I think the one that stands out the most for me is the first 52 00:02:55,440 --> 00:02:57,680 time I remember being bullied by an older student. 53 00:02:57,680 --> 00:03:01,600 So I was diagnosed with juvenile rheumatoid arthritis at age 7, 54 00:03:01,960 --> 00:03:06,840 and my disease was very rapid and I didn't know that at the 55 00:03:06,840 --> 00:03:08,960 time, Right. You don't know how to compare 56 00:03:08,960 --> 00:03:12,080 things when you're little, let alone with a new disability, a 57 00:03:12,080 --> 00:03:15,720 new medical condition. But the story goes in my vague 58 00:03:15,720 --> 00:03:20,040 memory of it was I always had to have my dad or my older sister 59 00:03:20,040 --> 00:03:24,000 or my mom lift me up on the 1st stair of a school bus. 60 00:03:24,560 --> 00:03:27,400 And I was still ambulatory at that time. 61 00:03:27,440 --> 00:03:29,760 But it stairs especially took me a long time. 62 00:03:30,160 --> 00:03:33,640 I would make my way up the three or four stairs onto the 63 00:03:33,960 --> 00:03:38,000 traditional old school school bus back in the mid to late 80s, 64 00:03:38,000 --> 00:03:42,600 right? And neighbor boy, who was 65 00:03:42,600 --> 00:03:46,920 probably like 6-7 years older than me, yelled from the back of 66 00:03:46,920 --> 00:03:49,560 the bus, Hey, Udenberg, can you hurry up? 67 00:03:49,560 --> 00:03:51,080 You're making me late for school. 68 00:03:51,440 --> 00:03:54,800 And the bus driver heard it and he pulled the bus over and he 69 00:03:55,360 --> 00:03:58,400 had the kid go outside and he literally picked the kid up by 70 00:03:58,400 --> 00:04:00,480 the collar and put him up against the bus. 71 00:04:01,280 --> 00:04:06,120 And that was probably my first memory of adult interaction 72 00:04:06,320 --> 00:04:09,960 because I was different. And then also, again, that 73 00:04:09,960 --> 00:04:12,880 discrimination, that being pointed out by older kids, 74 00:04:12,880 --> 00:04:16,600 because at that time, I was, you know, just a typical first 75 00:04:16,600 --> 00:04:18,079 grader. And yeah, I had other things 76 00:04:18,079 --> 00:04:22,760 going on, but I didn't notice it and my peers didn't call it out 77 00:04:22,800 --> 00:04:25,600 and noticing it with me. I just was still Jenna at that 78 00:04:25,600 --> 00:04:27,560 time. And of course all those things, 79 00:04:27,600 --> 00:04:29,640 you know, would definitely not be allowed today. 80 00:04:29,920 --> 00:04:33,160 But the bus driver also made that kid walk to school and we 81 00:04:33,160 --> 00:04:36,680 were like 4 or 5 miles out of town from where the school was 82 00:04:36,680 --> 00:04:38,160 that he had to go to. So did. 83 00:04:38,240 --> 00:04:41,440 He at least learn his lesson. Yeah, I never had a bad 84 00:04:41,440 --> 00:04:44,360 interaction with him again. And actually his younger sister, 85 00:04:44,360 --> 00:04:46,600 who is still a couple years older than me, and we were 86 00:04:46,840 --> 00:04:48,760 pretty good friends. Well, I think he learned his 87 00:04:48,760 --> 00:04:52,760 lesson a lot more with that memory. 88 00:04:52,800 --> 00:04:56,160 Was there pain when you moved or was it more restriction? 89 00:04:56,160 --> 00:04:58,920 It was like a mix of both. It was a lot of pain because 90 00:04:58,920 --> 00:05:02,160 arthritis just causes so much inflammation and so much rapid 91 00:05:02,160 --> 00:05:05,040 deterioration. And then because my disease was 92 00:05:05,040 --> 00:05:09,040 so rapid and just angry, for lack of a better word. 93 00:05:09,200 --> 00:05:11,800 It started at my right knee and before I knew what it was into 94 00:05:11,800 --> 00:05:14,600 the left ankle and then it was into the right hip and then it 95 00:05:14,600 --> 00:05:17,400 jumped over to the hands. I mean, so I was just like this 96 00:05:17,400 --> 00:05:20,600 big Jenga aggravation game, right? 97 00:05:20,600 --> 00:05:23,280 For the doctors and for me and for my parents. 98 00:05:23,640 --> 00:05:28,040 No, it was not fun. Actually, You know, thankfully, 99 00:05:28,040 --> 00:05:31,760 my parents let me be in charge of my medical decision starting 100 00:05:31,760 --> 00:05:35,320 at age 15. And so that's when I had to 101 00:05:35,320 --> 00:05:37,320 start doing orthopedic surgeries. 102 00:05:38,200 --> 00:05:43,800 But I also thankful for having a really skilled and gut honest 103 00:05:43,800 --> 00:05:46,400 physical therapist for my first go around. 104 00:05:46,400 --> 00:05:50,320 And he said, there's going to be to my mom and I and probably my 105 00:05:50,320 --> 00:05:52,720 grandma was there with my mom for this appointment. 106 00:05:52,720 --> 00:05:56,160 And I remember him looking at my mom and saying, your daughter is 107 00:05:56,160 --> 00:06:00,480 now this like red Ferrari for quote UN quote, well doing 108 00:06:00,480 --> 00:06:05,040 people in this world, you're going to have people finding you 109 00:06:05,320 --> 00:06:08,200 and saying we want to heal, quote UN quote, your child. 110 00:06:08,520 --> 00:06:11,800 We will be the cure. We will start with surgeries and 111 00:06:11,800 --> 00:06:14,840 he said you can go down that road, but once you allow surgery 112 00:06:14,840 --> 00:06:17,920 on your daughter, she will never not have surgery. 113 00:06:18,640 --> 00:06:21,040 So I made it all the way until I was 15. 114 00:06:21,560 --> 00:06:26,040 I was in high school band and they had to use a track chair. 115 00:06:26,040 --> 00:06:30,320 So it looked like pretty much like a a big rubberized military 116 00:06:30,320 --> 00:06:33,800 tank or people know what a track chair looks like now, very 117 00:06:33,800 --> 00:06:38,560 similar makeup of the tracks. But they would put my manual 118 00:06:38,560 --> 00:06:42,800 wheelchair backed up onto it and two little pins would hold on to 119 00:06:42,800 --> 00:06:46,000 my handlebars. And then they would yank me back 120 00:06:46,680 --> 00:06:49,360 into like a wheelie. And then they would pretty much 121 00:06:49,360 --> 00:06:53,320 tip me over the stairs. So if the paraprofessional 122 00:06:53,320 --> 00:06:57,120 didn't get those tracks lined up just right on the edges of the 123 00:06:57,120 --> 00:07:01,280 stairs, I would jolt down. So after about a year and a half 124 00:07:01,280 --> 00:07:04,120 of doing that, my knees were dressed on fire. 125 00:07:04,640 --> 00:07:08,360 And we had been waiting for a pediatric orthopedic surgeon to 126 00:07:08,400 --> 00:07:11,800 come to move down from Canada. And we've been waiting for about 127 00:07:11,800 --> 00:07:15,480 a year. And at 15, I was like, come on, 128 00:07:15,480 --> 00:07:17,800 I don't understand this. Just like, let's figure this 129 00:07:17,800 --> 00:07:20,120 out. So finally the day came. 130 00:07:20,240 --> 00:07:22,440 It was time to put me under. They're going to do a 131 00:07:22,960 --> 00:07:25,280 Arthroscopy, so they're just going to shove a camera in the 132 00:07:25,280 --> 00:07:27,480 knee, see what's going on, clean up some things. 133 00:07:27,640 --> 00:07:30,360 And they put me out and I felt like it was like 5 minutes 134 00:07:30,360 --> 00:07:31,720 later. It was much longer than that, 135 00:07:31,720 --> 00:07:34,320 but they woke me up and I was like, wow, if this is what it 136 00:07:34,320 --> 00:07:38,200 means to have surgery, this is nothing like Jenna, Jenna, 137 00:07:38,200 --> 00:07:39,920 Jenna, we absolutely did nothing. 138 00:07:40,240 --> 00:07:41,680 We like literally knocked you out. 139 00:07:41,680 --> 00:07:43,960 We did some scans. We didn't even open your knee 140 00:07:44,280 --> 00:07:47,080 cause in the scans we found out that I had broken my femurs. 141 00:07:47,640 --> 00:07:50,000 So both knees were completely fused. 142 00:07:50,640 --> 00:07:53,760 And the few days before surgery when I came home from school and 143 00:07:53,760 --> 00:07:55,840 said, mom, it's a miracle, I don't need surgery. 144 00:07:55,840 --> 00:07:59,800 I can move my knees again. My doctor's like you thought you 145 00:07:59,800 --> 00:08:03,920 were healed or cured or whatever word you want to use because I 146 00:08:03,920 --> 00:08:07,920 had created hairline fractures in my femur and I was moving in 147 00:08:07,920 --> 00:08:11,640 the fracture. So the I had no pain moving in a 148 00:08:11,640 --> 00:08:15,440 broken leg, but I had tremendous pain with my fused knees. 149 00:08:16,040 --> 00:08:19,040 So they were just sitting in the operating room like, what are we 150 00:08:19,040 --> 00:08:21,600 going to do with this girl? And like, thankfully my growth 151 00:08:21,600 --> 00:08:24,840 plates were closed. So Yep, they're like, all right, 152 00:08:24,840 --> 00:08:29,800 well, we don't have orthopedic knees in stock because that was 153 00:08:29,800 --> 00:08:32,960 again back in 1995. So it wasn't like who Amazon, a 154 00:08:32,960 --> 00:08:36,919 smaller knee joint to rural Minnesota, right? 155 00:08:37,159 --> 00:08:39,600 That didn't exist. So they're like, Yep, we're just 156 00:08:39,600 --> 00:08:41,120 going to wake you up. You're going to stay in the 157 00:08:41,120 --> 00:08:43,640 hospital for another three days until this part gets shipped 158 00:08:43,640 --> 00:08:45,920 here. And once we got the parts, we're 159 00:08:45,920 --> 00:08:48,680 going to put you under, and then six months later we'll put you 160 00:08:48,680 --> 00:08:50,920 under again, 'cause then we got to do your other knee, 'cause I 161 00:08:50,920 --> 00:08:55,520 had both femurs were fractured. So my very stoic orthopedic 162 00:08:55,520 --> 00:08:59,080 surgeon, it was always so funny later in life, right? 163 00:08:59,080 --> 00:09:02,440 Like once I was in college and done with a lot of surgeries, I 164 00:09:02,440 --> 00:09:05,200 would always know when he had a student doctor with him because 165 00:09:05,200 --> 00:09:06,440 I could hear him out in the hallway. 166 00:09:06,440 --> 00:09:10,520 Normally he'd just be very low and furrowed brow and typical 167 00:09:10,600 --> 00:09:13,400 arrogant, you know, orthopedic surgeon. 168 00:09:13,760 --> 00:09:17,120 But then he'd come to my store and be like this girl and his 169 00:09:17,120 --> 00:09:20,320 voice would jump like 2 octaves and he'd have a big smile on his 170 00:09:20,320 --> 00:09:23,000 face. And so I was one of his favorite 171 00:09:23,000 --> 00:09:26,840 weird medical stories to tell him that once I started surgery, 172 00:09:27,040 --> 00:09:30,840 every six, 912 months I was having an orthopedic surgery 173 00:09:30,840 --> 00:09:33,760 because he'd fix one part and another part would break and 174 00:09:33,760 --> 00:09:36,360 another part would break and another part would get jealous. 175 00:09:36,400 --> 00:09:39,920 And that was just my story for many decades. 176 00:09:40,200 --> 00:09:41,800 Yeah, kind of like the weakest link, right? 177 00:09:41,800 --> 00:09:43,960 They fix one thing and then the next thing that's kind of the 178 00:09:43,960 --> 00:09:46,560 weakest link would start causing issues and and such. 179 00:09:46,920 --> 00:09:49,360 But you know what? It just automatically adapts. 180 00:09:49,680 --> 00:09:51,360 And so then it's like we wouldn't even know that 181 00:09:51,360 --> 00:09:53,680 something bad had happened. And that was just like, yeah, 182 00:09:53,680 --> 00:09:56,720 like you said, the weakest link or just the chain reaction. 183 00:09:57,120 --> 00:10:00,280 And then the other hard part was like, oh, we have to do this 184 00:10:00,280 --> 00:10:03,600 now. We really protocol says we need 185 00:10:03,600 --> 00:10:06,760 to wait two years. Well, I didn't have two years or 186 00:10:06,760 --> 00:10:08,800 I didn't have a year. And so then it was like I was 187 00:10:08,800 --> 00:10:12,440 just constantly playing catch up of trying to heal something, but 188 00:10:12,440 --> 00:10:15,000 then also trying to live independently at the same time. 189 00:10:15,160 --> 00:10:21,120 So, yeah, from like age 15 to my early 30s, it was surgery after 190 00:10:21,120 --> 00:10:24,120 surgery. So I got good at it and started, 191 00:10:24,120 --> 00:10:27,080 you know, I'd wake myself up at 11:00 at night before surgery, 192 00:10:27,080 --> 00:10:29,480 make a big steak dinner, call it my Last Supper. 193 00:10:29,840 --> 00:10:31,720 My family hated when I talk that way. 194 00:10:31,960 --> 00:10:34,800 But you know, I just like, you never know, right? 195 00:10:34,800 --> 00:10:36,600 And that's a different way of life, right? 196 00:10:36,600 --> 00:10:39,560 So going back to your first question too, right? 197 00:10:39,560 --> 00:10:43,680 It was just full circle of now I fully embraced that this is my 198 00:10:43,680 --> 00:10:47,840 life and it's different. A typical child, a typical 199 00:10:47,840 --> 00:10:51,960 adolescent, a typical college kid, a typical adult doesn't go 200 00:10:51,960 --> 00:10:53,920 through the stuff that I've had to go through. 201 00:10:54,120 --> 00:10:56,480 So how many surgeries did you have to go through? 202 00:10:56,520 --> 00:10:59,360 Like is there a running total you have like a tally somewhere? 203 00:10:59,360 --> 00:11:03,360 Like like how many surgeries? I should get really good at 204 00:11:03,360 --> 00:11:05,320 like, having all the all the dates down, right? 205 00:11:05,320 --> 00:11:07,040 Because like he's asking me about them. 206 00:11:07,400 --> 00:11:11,120 I think I'm about 16 or 17 surgeries, Yeah. 207 00:11:12,120 --> 00:11:14,920 And most of them are orthopedic, right? 208 00:11:14,920 --> 00:11:18,160 Like I also had to be put out out for, you know, like wisdom 209 00:11:18,160 --> 00:11:22,600 teeth and like other things that normal, typical people, you 210 00:11:22,600 --> 00:11:24,680 know, might get a little happy gas for. 211 00:11:24,840 --> 00:11:27,400 For me, it's a it's a total knockout kind of a thing. 212 00:11:27,840 --> 00:11:31,680 But yeah, so probably at least fifteen of those are orthopedic 213 00:11:31,680 --> 00:11:35,840 hardcore big surgeries. And then I so I have 6 joint 214 00:11:35,840 --> 00:11:38,280 replacements. So I've got both ankles, both 215 00:11:38,280 --> 00:11:40,280 knees, a right hip and a left elbow. 216 00:11:40,400 --> 00:11:44,120 And then many of those have been redone throughout the years. 217 00:11:44,120 --> 00:11:45,680 So you're like the Bionic Woman, right? 218 00:11:45,680 --> 00:11:48,920 You just pretty much a lot of hardware and. 219 00:11:48,920 --> 00:11:50,000 Tools. Pretty much, yeah. 220 00:11:50,920 --> 00:11:53,120 Yeah. I just had a a robotics camp for 221 00:11:53,120 --> 00:11:55,360 girls and they were so funny. So we brought some different 222 00:11:55,360 --> 00:11:58,320 women in that are professionals in the STEM world. 223 00:11:58,320 --> 00:12:01,360 And the one said, yeah, well, maybe your grandparents have 224 00:12:01,360 --> 00:12:02,840 some prosthetic joints, whatever. 225 00:12:02,840 --> 00:12:04,800 Oh yeah. My grandma has a a hip. 226 00:12:04,800 --> 00:12:08,280 And so that I raised my hand. They're like, you have a hip and 227 00:12:08,280 --> 00:12:11,080 maybe like, oh, my grandpa has a knee and I'd raise my hand. 228 00:12:11,080 --> 00:12:15,840 I'd be like, you have a knees, like Yep, a lot of it is metal 229 00:12:15,840 --> 00:12:18,000 and it's OK. It makes life possible. 230 00:12:18,080 --> 00:12:20,600 How difficult was it to understand what was happening to 231 00:12:20,600 --> 00:12:23,480 you when you were young? Did you understand right away? 232 00:12:23,480 --> 00:12:26,160 Did they explain it to you very well or did you have to start to 233 00:12:26,160 --> 00:12:29,040 put the two and two together? I think just because of the 234 00:12:29,040 --> 00:12:33,560 generation I was born in, it was a lot more of figuring it out 235 00:12:33,720 --> 00:12:36,520 and sometimes figuring it out on my own because I had great 236 00:12:36,520 --> 00:12:42,080 doctors and a lot of them were with me from like post doctorate 237 00:12:42,120 --> 00:12:45,120 to retirement. So my rheumatologist was pretty 238 00:12:45,120 --> 00:12:47,560 green when I first started seeing him and he just retired 239 00:12:47,560 --> 00:12:51,200 like 6-7 years ago. And on our last appointment, I 240 00:12:51,200 --> 00:12:53,680 remember him saying, you know, thank you for putting up with me 241 00:12:53,680 --> 00:12:55,600 because I was kind of arrogant to begin with. 242 00:12:55,600 --> 00:12:56,760 But you taught me a lot of lessons. 243 00:12:56,760 --> 00:12:58,280 But I couldn't tell you that until now. 244 00:12:59,320 --> 00:13:02,600 And I was like, ooh, thanks, but scary. 245 00:13:02,600 --> 00:13:05,480 But you know, all good. We had a great relationship in 246 00:13:05,480 --> 00:13:08,000 that sense. But I'm just so thankful for 247 00:13:08,240 --> 00:13:11,920 especially kids that are getting arthritis now that there's just 248 00:13:11,920 --> 00:13:15,720 so much more knowledge about treating the whole patient, 249 00:13:15,720 --> 00:13:17,040 right? Doesn't mean that medical 250 00:13:17,040 --> 00:13:20,160 facilities are doing that, but there is more knowledge out 251 00:13:20,160 --> 00:13:21,680 there. There are more resources. 252 00:13:21,680 --> 00:13:26,600 There are more words to explain. There are different medications 253 00:13:26,600 --> 00:13:29,680 and different medical procedures, but the one warning 254 00:13:29,680 --> 00:13:33,080 that I sometimes have is that another good friend of mine and 255 00:13:33,080 --> 00:13:36,120 I tried to put together a support group for kids with JRA 256 00:13:36,120 --> 00:13:37,920 probably about a decade or so ago. 257 00:13:37,960 --> 00:13:41,720 And a pediatric rheumatologist came and he just said, kids 258 00:13:41,720 --> 00:13:43,240 don't deal with what you guys deal with. 259 00:13:43,240 --> 00:13:45,240 We just give them drugs and they don't know that they're 260 00:13:45,600 --> 00:13:48,080 different. And I was like, well, that's 261 00:13:48,080 --> 00:13:49,520 weird. I'm pretty sure you would still 262 00:13:49,520 --> 00:13:51,720 know you're different because drugs have side effects. 263 00:13:52,160 --> 00:13:55,600 Other kids your age don't have to take a medicine that knocks 264 00:13:55,600 --> 00:13:58,040 you out for a day or two or makes you sick or makes you 265 00:13:58,040 --> 00:13:59,680 immunocompromised or you know what I mean? 266 00:13:59,680 --> 00:14:02,160 Like, so it was, it was very alarming. 267 00:14:02,160 --> 00:14:04,920 So then that's when I was teaching in the classroom and 268 00:14:04,920 --> 00:14:08,320 one of my students did have that and they didn't talk to me about 269 00:14:08,320 --> 00:14:10,120 it or anything like that, right. Like we didn't have a 270 00:14:10,120 --> 00:14:12,480 relationship around that. I was just his teacher and all 271 00:14:12,480 --> 00:14:17,280 the things, but I watched and I could just tell like, no, he he 272 00:14:17,280 --> 00:14:20,080 does know that he's different, right? 273 00:14:20,080 --> 00:14:22,280 Like the educational psychology of it all. 274 00:14:22,280 --> 00:14:25,600 I was watching in real time. And so it just makes me really 275 00:14:25,600 --> 00:14:29,600 sad when the medical field, at least at that time, wasn't 276 00:14:29,600 --> 00:14:33,880 acknowledging the fact that no, yes, kids are resilient. 277 00:14:33,920 --> 00:14:36,040 You know, that's why I always say I'm so glad that I became 278 00:14:36,040 --> 00:14:38,360 disabled when I was a kid. And, you know, there are parts 279 00:14:38,360 --> 00:14:40,880 of my life I just don't know any different because I've been in 280 00:14:40,880 --> 00:14:42,840 wheels for as long as I can remember. 281 00:14:42,880 --> 00:14:46,160 So sometimes I, you know, have a memories of the running and the 282 00:14:46,160 --> 00:14:49,160 jumping and the cartwheels and the playing in pools and playing 283 00:14:49,160 --> 00:14:51,600 in rivers and you know, all those kinds of things. 284 00:14:51,600 --> 00:14:55,080 And yet I can still do a lot of that stuff, just in a different 285 00:14:55,080 --> 00:14:56,640 way. Or maybe that wasn't as 286 00:14:56,640 --> 00:14:59,920 important. All those specific details, but 287 00:14:59,920 --> 00:15:02,920 their relationships you build, the adventures, you have the 288 00:15:02,920 --> 00:15:05,520 ability to be outside and be like others. 289 00:15:05,520 --> 00:15:07,480 That still exists. It's like, again, it just looks 290 00:15:07,480 --> 00:15:09,640 different. And so I just, I just really 291 00:15:09,640 --> 00:15:15,440 hope that in the medical world, we continue to move forward and 292 00:15:15,440 --> 00:15:18,280 treating and seeing the whole patient, the whole kid, and 293 00:15:18,280 --> 00:15:20,040 especially the whole family, right? 294 00:15:20,040 --> 00:15:22,640 There are so many things that my parents and my older siblings 295 00:15:23,040 --> 00:15:25,360 went through that back in that time. 296 00:15:25,360 --> 00:15:28,880 There was no diagnosis for. There was no term for, there was 297 00:15:28,880 --> 00:15:31,520 no support for. It's probably a lot better, but 298 00:15:31,520 --> 00:15:33,960 he's now you got to fight insurance companies and seems 299 00:15:33,960 --> 00:15:35,680 like there's a lot of hoops he got to jump through. 300 00:15:35,680 --> 00:15:38,880 I'm sure physical therapy was, it helps, but it probably hurt 301 00:15:38,880 --> 00:15:41,040 you a lot too with everything that you had right? 302 00:15:41,200 --> 00:15:45,920 I went from our local rural clinic situation down to the 303 00:15:45,920 --> 00:15:49,760 next bigger city and they had more of an outpatient rehab from 304 00:15:49,760 --> 00:15:54,120 pediatric through adulthood and I was given APT who was fresh 305 00:15:54,120 --> 00:15:57,000 out of PT school and she only treated me for I think it was 306 00:15:57,000 --> 00:16:00,160 like a year and a half or two years and then her and her 307 00:16:00,160 --> 00:16:02,960 husband moved down to be closer to family to start their family 308 00:16:02,960 --> 00:16:05,440 and all the things. But we are still great friends 309 00:16:05,440 --> 00:16:07,800 to this day. I've watched them raise and 310 00:16:07,800 --> 00:16:11,800 graduate 5 kids and have their PT businesses. 311 00:16:11,800 --> 00:16:16,480 And so those relationships are what make life so rich and so 312 00:16:16,480 --> 00:16:20,120 beautiful and very deep Meaning Even though she would torture 313 00:16:20,120 --> 00:16:23,440 me, even though she would make me cry but for my betterment in 314 00:16:23,440 --> 00:16:25,880 some ways. And yet even in that example, my 315 00:16:25,880 --> 00:16:30,400 current PT she's like well old me would torture you this way 316 00:16:30,400 --> 00:16:34,000 and you would really hate me. But new me and new medical 317 00:16:34,000 --> 00:16:36,080 revelations say we should do this instead. 318 00:16:36,080 --> 00:16:40,640 And I'm like, I'm not sweating, I'm not crying, I'm not in pain. 319 00:16:40,800 --> 00:16:43,280 Is this really working? And then sure enough, a couple 320 00:16:43,280 --> 00:16:46,280 weeks later, you see an increase in movement or strength or, you 321 00:16:46,280 --> 00:16:50,640 know, whatever the goal is. And so again, we're just, we're 322 00:16:50,640 --> 00:16:52,640 always learning. You ever get your revenge and 323 00:16:52,640 --> 00:16:56,280 say Oh my my my hand slipped and kind of give them this mag back? 324 00:16:56,680 --> 00:16:57,920 Right. In case they're listening, I 325 00:16:57,920 --> 00:17:00,720 might not want to answer that. They know, right? 326 00:17:01,840 --> 00:17:03,840 No, they know because I'm like, oh, my hook slipped. 327 00:17:03,840 --> 00:17:07,040 I'm sorry, you know, Sorry not. Whoops. 328 00:17:07,800 --> 00:17:10,800 Right. So how did you protect your 329 00:17:10,800 --> 00:17:13,319 confidence when the world sometimes treated you 330 00:17:13,319 --> 00:17:15,920 differently? Honestly, I don't think I did 331 00:17:15,920 --> 00:17:18,920 for a lot of life. Getting battered by the world, 332 00:17:18,920 --> 00:17:22,960 getting battered by society, getting battered by well meaning 333 00:17:22,960 --> 00:17:25,520 adults and sometimes even family, Right. 334 00:17:25,560 --> 00:17:28,240 No pain, no gain. And like really, I want to shove 335 00:17:28,240 --> 00:17:31,640 that somewhere where you don't want it because you have no idea 336 00:17:31,640 --> 00:17:34,480 what that what that means. Yeah. 337 00:17:34,480 --> 00:17:36,280 You know, and I, I battled depression. 338 00:17:36,280 --> 00:17:39,840 I, you know, I had a, a bout of really deep depression and a 339 00:17:39,840 --> 00:17:43,080 suicide ideation and a couple different plans and all the 340 00:17:43,080 --> 00:17:45,640 things. And so it's real, right? 341 00:17:45,640 --> 00:17:48,920 Sometimes medication does it to us, sometimes isolation does it. 342 00:17:48,920 --> 00:17:52,160 Sometimes a constant pain, chronic pain, like, you know, 343 00:17:52,160 --> 00:17:53,840 some of that stuff is just no joke. 344 00:17:54,360 --> 00:17:57,120 Living up in northern rural Minnesota where the sun doesn't 345 00:17:57,120 --> 00:17:59,360 shine very often during some of our months. 346 00:17:59,480 --> 00:18:03,000 That also plays into it, right? Again, I just think we're in 347 00:18:03,000 --> 00:18:08,040 such a better space potentially as a society, but I don't think 348 00:18:08,040 --> 00:18:12,520 we always embrace that new knowledge or embrace how that 349 00:18:12,520 --> 00:18:16,280 can look or sometimes being the best support for our loved ones 350 00:18:16,280 --> 00:18:18,440 as they go through these different seasons of life and 351 00:18:18,440 --> 00:18:21,840 change and adaptation and all the things. 352 00:18:21,840 --> 00:18:23,720 Right. So, yeah. 353 00:18:23,720 --> 00:18:26,880 But I would say now as somebody who's gone through that, as 354 00:18:26,880 --> 00:18:29,800 somebody who's on the other side of some parts of it, but it's 355 00:18:29,800 --> 00:18:33,240 still impacted by isolation. It's still impacted by people 356 00:18:33,240 --> 00:18:37,120 that just don't get it. And now I would say on this side 357 00:18:37,120 --> 00:18:41,720 of this season, it's more the people that don't get it just 358 00:18:41,720 --> 00:18:44,240 because they haven't had that lived experience, I seem to have 359 00:18:44,240 --> 00:18:47,720 more grace for. But the people that in my mind 360 00:18:47,720 --> 00:18:51,320 right at that moment should know better, should be doing better, 361 00:18:51,320 --> 00:18:54,560 should be asking curious questions instead of making 362 00:18:54,560 --> 00:18:58,240 stupid comments, right? Those are folks that I tend to 363 00:18:58,240 --> 00:19:00,320 have less patience for currently. 364 00:19:00,320 --> 00:19:02,360 But I'm also a middle-aged woman, so who knows? 365 00:19:02,880 --> 00:19:04,120 I think that's part of getting older. 366 00:19:04,640 --> 00:19:07,320 You know, it's like it's two people out here. 367 00:19:07,320 --> 00:19:08,560 I want to go do something different. 368 00:19:09,200 --> 00:19:11,440 Right. I want to go talk to the trees. 369 00:19:11,680 --> 00:19:14,560 I want to just go watch that squirrel even though it is what 370 00:19:14,560 --> 00:19:16,400 it is. So is there a moment when you 371 00:19:16,400 --> 00:19:20,160 realized you could either let adversity define you or learn to 372 00:19:20,160 --> 00:19:23,040 move with it? I would say some of my most 373 00:19:23,040 --> 00:19:28,800 pivotal moments in that has been around developing my leadership 374 00:19:28,800 --> 00:19:32,880 skills. So in 2016, I had APT and an OT 375 00:19:33,320 --> 00:19:36,920 nominate me for a local Rehab units Journey Award. 376 00:19:36,920 --> 00:19:41,160 And so the whole premise of the Journey award is acknowledging 377 00:19:41,240 --> 00:19:45,240 someone who not only is making a path for themselves, but for 378 00:19:45,240 --> 00:19:47,920 others along the way. And the funny part about 379 00:19:47,960 --> 00:19:52,880 receiving this award was I was so consumed in my own career at 380 00:19:52,880 --> 00:19:56,760 that time and in my own medical pain and healing from a surgery 381 00:19:56,760 --> 00:19:59,480 and other things that I was like, what are you talking 382 00:19:59,480 --> 00:20:01,200 about? Like Jenna of three years ago, 383 00:20:01,440 --> 00:20:04,320 Sure, you should have nominated me then Jenna in the future. 384 00:20:04,360 --> 00:20:07,560 But right now I'm like, I'm not doing anything for anyone else 385 00:20:07,960 --> 00:20:09,960 because I don't have the capacity or I don't have the 386 00:20:09,960 --> 00:20:14,880 crip spoons, as we say, to do intentionally more for others, 387 00:20:14,920 --> 00:20:18,440 right? But through that process, I I 388 00:20:18,440 --> 00:20:22,160 realized through the eyes of others that by me just being me. 389 00:20:22,600 --> 00:20:27,600 Does impact the path for others, does impact how providers not 390 00:20:27,600 --> 00:20:30,600 only treat me, but will treat others in the future or 391 00:20:30,600 --> 00:20:33,720 currently. And then that for me, that led 392 00:20:33,720 --> 00:20:38,840 to increasing my confidence of, oh, there's this thing called 393 00:20:38,840 --> 00:20:43,200 Blandin Foundation and being a community leader, But that also 394 00:20:43,200 --> 00:20:47,320 means going away to a retreat center that's 2 1/2 three hours 395 00:20:47,320 --> 00:20:49,480 away from here. Well, traveling as a manual 396 00:20:49,480 --> 00:20:52,320 wheelchair user with different needs to someplace you've never 397 00:20:52,320 --> 00:20:55,800 been before with people that you don't know very well. 398 00:20:56,000 --> 00:20:58,760 And I don't want to bring APCA or a family member with because 399 00:20:58,760 --> 00:21:01,840 I'm like, then I'm going to be distracted about their needs and 400 00:21:01,840 --> 00:21:04,240 what are they up to? And that led to it. 401 00:21:04,240 --> 00:21:07,360 And I was like, great, I was shown as an as an alternate. 402 00:21:07,360 --> 00:21:09,680 It means I might go, but I don't have to go. 403 00:21:09,680 --> 00:21:12,240 So I'm good enough that they want me, but I don't have to go 404 00:21:12,240 --> 00:21:14,480 and do the peopley thing like you said, right? 405 00:21:14,840 --> 00:21:17,360 And Nope, sure enough, they're like, no, we're going to accept 406 00:21:17,360 --> 00:21:19,840 26 people this year instead of 24. 407 00:21:19,840 --> 00:21:23,240 So you get to go. And it was the best, the best 408 00:21:23,240 --> 00:21:26,120 time, which then led to my Bush Fellowship, which then led to 409 00:21:26,120 --> 00:21:28,840 creating a nonprofit and becoming a published author. 410 00:21:28,840 --> 00:21:33,760 And so, you know, it's just that that one application, that one 411 00:21:33,760 --> 00:21:38,200 brief glimpse of thinking about yourself in positive ways, 412 00:21:38,200 --> 00:21:40,480 right? Taking that first step of, you 413 00:21:40,480 --> 00:21:45,320 know, using that confidence, like you said of I can do this 414 00:21:46,160 --> 00:21:49,320 for me, for others and see what happens. 415 00:21:49,480 --> 00:21:52,640 Yeah, it's easy and especially in like your situation to go 416 00:21:52,640 --> 00:21:54,720 kind of the dark side. Like you kind of talked about 417 00:21:54,720 --> 00:21:57,800 you had some pretty dark thoughts, but let's kind of look 418 00:21:57,800 --> 00:22:01,440 at what you you went to that foundation and then you founded 419 00:22:01,760 --> 00:22:04,680 Above and Beyond with you. Can you talk about that a little 420 00:22:04,680 --> 00:22:06,320 bit? When I was a teacher, I was a 421 00:22:06,320 --> 00:22:10,120 music educator for 19 years. And every summer, one of my 422 00:22:10,160 --> 00:22:14,200 PCA's who is also an educator, I'd be like, I need to figure 423 00:22:14,200 --> 00:22:19,200 out a way to like, find other folks that can pay for me to 424 00:22:19,200 --> 00:22:23,680 travel up and down our North Shore doing access work, right? 425 00:22:23,680 --> 00:22:26,040 Like finding the hotels that actually work for us, finding 426 00:22:26,040 --> 00:22:29,280 the resorts that actually, you know, meet our needs, finding 427 00:22:29,280 --> 00:22:32,280 the cool restaurants and donut shops and gift shops. 428 00:22:32,280 --> 00:22:36,160 And, you know, like, becoming that person that can help others 429 00:22:36,640 --> 00:22:39,160 explore things. But as a music teacher early in 430 00:22:39,160 --> 00:22:42,280 my career, I was like, I don't have the funds to because 431 00:22:42,280 --> 00:22:44,640 everything's more expensive as a disabled person, right? 432 00:22:44,640 --> 00:22:46,800 The hotel rooms are bigger and have different amenities. 433 00:22:46,800 --> 00:22:48,840 So then therefore the pricing is bigger. 434 00:22:49,200 --> 00:22:51,840 And she's like, yeah, we got to figure this out. 435 00:22:51,840 --> 00:22:54,280 And so then it was like, you know, a decade went by and I was 436 00:22:54,280 --> 00:22:56,840 like, life just happens. And then almost another decade 437 00:22:56,840 --> 00:22:59,280 went by. And so when I was in my 2020 438 00:22:59,280 --> 00:23:03,560 Bush Fellowship, I, it was the middle of the pandemic, right? 439 00:23:03,880 --> 00:23:06,560 And my school district came back and said we're no longer 440 00:23:06,560 --> 00:23:08,920 interested in accommodating your work from home order. 441 00:23:09,080 --> 00:23:13,840 So here's disability retirement. And I was like, big identity 442 00:23:13,840 --> 00:23:17,200 crisis, right? And I was like, all right, I'm 443 00:23:17,840 --> 00:23:20,800 in the fellowship. I already have the process 444 00:23:20,800 --> 00:23:23,000 started to becoming a, a published author. 445 00:23:23,440 --> 00:23:28,560 So what if I use the proceeds of my book, My story to start a 446 00:23:28,560 --> 00:23:30,880 nonprofit? What does that mean? 447 00:23:30,880 --> 00:23:33,720 I've been told by a good friend of mine, like I started a 448 00:23:33,720 --> 00:23:37,080 nonprofit for a respite care facility a decade ago. 449 00:23:37,360 --> 00:23:40,240 So once you once you jump into the nonprofit world, it, it's 450 00:23:40,240 --> 00:23:42,480 nothing but work. It's amazing and it's good work, 451 00:23:42,560 --> 00:23:45,880 but it's work. And so got connected with some 452 00:23:45,880 --> 00:23:48,760 local folks who have also started nonprofits previously 453 00:23:48,760 --> 00:23:51,120 and they were fantastic. It above and beyond with you 454 00:23:51,120 --> 00:23:54,320 would not be here today without the volunteer hours of folks 455 00:23:54,320 --> 00:23:58,280 that gave back to me. And then in return, I've given 456 00:23:58,280 --> 00:24:00,080 back to others to start their work. 457 00:24:00,080 --> 00:24:02,800 And sometimes I find out that the nonprofit version is not 458 00:24:02,920 --> 00:24:04,400 what's best for them and all of that. 459 00:24:04,400 --> 00:24:08,080 But we just really saw. I saw the fact that the 460 00:24:08,080 --> 00:24:11,120 Americans with Disabilities Act, the ADA is the largest unfunded 461 00:24:11,120 --> 00:24:13,920 mandate the American government has ever put into place. 462 00:24:13,920 --> 00:24:16,560 And while I'm super thankful it's there and life has greatly 463 00:24:16,560 --> 00:24:19,560 changed, it's kind of weird when I go, Oh well, I was able to 464 00:24:19,560 --> 00:24:24,320 disabled in 1988, two years before the ADA was even a law, 465 00:24:24,320 --> 00:24:27,160 right? Makes me feel super old, but it 466 00:24:27,160 --> 00:24:30,320 also makes me go, oh, I've lived through a lot of different 467 00:24:30,320 --> 00:24:34,480 implementations and a lot of different lack of access. 468 00:24:34,840 --> 00:24:40,120 And so when I put all that together, it was like, so a non 469 00:24:40,120 --> 00:24:44,160 profit would make sense because all of these local small mom and 470 00:24:44,160 --> 00:24:48,400 pop businesses have no access to grants because they're small 471 00:24:48,400 --> 00:24:51,960 businesses have no access to the training. 472 00:24:51,960 --> 00:24:55,200 They need to figure out how to put in their budget and their 473 00:24:55,200 --> 00:24:58,560 line items, accessibility and the maintenance of those things 474 00:24:58,920 --> 00:25:02,480 as well as retrofitting versus using universal design from the 475 00:25:02,480 --> 00:25:06,960 get go. And so how can we above and 476 00:25:06,960 --> 00:25:09,800 beyond with you start plugging those holes? 477 00:25:09,800 --> 00:25:11,440 How can we start bridging those gaps? 478 00:25:11,440 --> 00:25:17,360 Because if we don't make those very tangible changes, it just 479 00:25:17,360 --> 00:25:21,120 stays out here in the ether of like, conversations, right? 480 00:25:21,280 --> 00:25:24,760 And I'm so tired of people talking up here because I've 481 00:25:24,760 --> 00:25:26,560 always been lower down here, right? 482 00:25:26,560 --> 00:25:29,120 And then I'm sitting here stewing as an introvert, like 483 00:25:29,680 --> 00:25:32,960 you need to talk to you, but you don't like you. 484 00:25:33,000 --> 00:25:35,800 But then I don't care because you just need to talk to each 485 00:25:35,800 --> 00:25:39,280 other and work together and make this happen, right? 486 00:25:39,640 --> 00:25:42,720 So Above and Beyond with You stands for the fact that you can 487 00:25:42,720 --> 00:25:45,360 go above and beyond the Americans with Disabilities Act. 488 00:25:45,600 --> 00:25:50,440 So often people have bought the lie that it's like Google 489 00:25:50,760 --> 00:25:54,760 whatever ADA thing you're looking for, and then therefore 490 00:25:54,760 --> 00:25:57,200 you just do that. And it's like, no, there's a 491 00:25:57,200 --> 00:26:01,080 saying in disability community and culture of nothing about us 492 00:26:01,080 --> 00:26:03,960 without us. So if you're planning to do 493 00:26:04,320 --> 00:26:07,120 something physical, if you're planning to change some of your 494 00:26:07,120 --> 00:26:10,480 programming, if you're planning to change a product, work with 495 00:26:10,480 --> 00:26:14,240 the local community or reach out to Above and Beyond with you to 496 00:26:14,240 --> 00:26:16,920 make those connections. So that way if you're especially 497 00:26:16,920 --> 00:26:20,240 if you're trying to do something with us or for us, like that 498 00:26:20,240 --> 00:26:23,000 just makes sense, right? And then the width stands for 499 00:26:23,000 --> 00:26:26,080 the fact that my inaugural board, we all had a connection 500 00:26:26,080 --> 00:26:28,080 to education. And that's what's made us stand 501 00:26:28,080 --> 00:26:31,960 out and be very unique in this world because it's all about the 502 00:26:31,960 --> 00:26:33,880 education. It's about all about asking 503 00:26:33,880 --> 00:26:36,600 those curious questions so that the people we're working with 504 00:26:36,600 --> 00:26:42,200 have that natural aha of like, I never saw life from that 505 00:26:42,200 --> 00:26:45,720 perspective before, or I never thought about it in this way, or 506 00:26:45,720 --> 00:26:49,000 I, I didn't even think about that whole people group really. 507 00:26:49,200 --> 00:26:52,880 People in chairs or people with walkers or people with vision 508 00:26:53,120 --> 00:26:56,040 impairments or needs, or they want to travel. 509 00:26:56,400 --> 00:26:58,520 They like to come to the North Shore of Lake Superior. 510 00:26:59,200 --> 00:27:00,560 You mean you want to get out of the house, right? 511 00:27:02,480 --> 00:27:05,400 They're they're professionals and they go to conferences too, 512 00:27:05,680 --> 00:27:10,800 you know, and so and then EU is a capital U because it's a a nod 513 00:27:10,800 --> 00:27:13,480 to my music career, because my little 5 year olds in 514 00:27:13,480 --> 00:27:15,360 kindergarten couldn't say Miss Udenberg. 515 00:27:15,960 --> 00:27:18,240 Most adults can't. Sometimes I can't. 516 00:27:18,520 --> 00:27:22,200 And so all the kids call me miss you So hence above and beyond 517 00:27:22,200 --> 00:27:25,200 with you. So we love working with a lot of 518 00:27:25,200 --> 00:27:26,960 times right now we're finding ourselves working with like 519 00:27:26,960 --> 00:27:31,600 state agencies or, or national conferences or those kinds of 520 00:27:31,600 --> 00:27:34,600 entities and agencies and organizations working to 521 00:27:34,600 --> 00:27:36,520 increase accessibility and inclusion. 522 00:27:36,680 --> 00:27:40,120 But we also love working with individuals and helping them in 523 00:27:40,120 --> 00:27:43,080 any way that we can as well. But our biggest thing is like, 524 00:27:43,400 --> 00:27:45,120 how can we break down the barriers? 525 00:27:45,120 --> 00:27:49,000 And also, how can we make transformational change that 526 00:27:49,000 --> 00:27:53,120 isn't just a quick, Oh, well, this one moment for Brad we 527 00:27:53,120 --> 00:27:56,320 helped with Nope. Like, let's help all the Brads. 528 00:27:56,400 --> 00:27:59,800 Let's help Brad in all aspects of life, not just this one 529 00:27:59,800 --> 00:28:02,320 little issue here. Yeah. 530 00:28:02,320 --> 00:28:05,400 So it's amazing work. We're a board of nine and we're 531 00:28:05,400 --> 00:28:08,640 all volunteers currently. Lots of work coming in and lots 532 00:28:08,640 --> 00:28:12,080 of trying to find that work life, medical stuff, balance. 533 00:28:12,080 --> 00:28:15,800 A few of the influencers in the disability world that I follow 534 00:28:15,800 --> 00:28:19,640 right now, A lot of us have found ourselves in hospitals or, 535 00:28:20,040 --> 00:28:22,480 you know, in the burnout stages where our bodies just finally 536 00:28:22,480 --> 00:28:26,040 say uncle. And that's a good warning for me 537 00:28:26,040 --> 00:28:30,120 and for my board because we have to figure out how we can build 538 00:28:30,120 --> 00:28:33,960 the work, how you build allyship, but then also how we 539 00:28:33,960 --> 00:28:38,280 become healthy examples in this whole process. 540 00:28:38,320 --> 00:28:41,280 And I think that's why there's just so many different little 541 00:28:42,000 --> 00:28:45,680 pockets of work because we get taken out so quickly by our 542 00:28:45,680 --> 00:28:49,400 different medical conditions. And so I think the more that we 543 00:28:49,400 --> 00:28:52,720 can also, even within my own community, breakdown those walls 544 00:28:52,720 --> 00:28:57,280 and breakdown those towers and isolation and an insulation to 545 00:28:57,280 --> 00:29:00,240 figure out how do we band together to continue this work 546 00:29:00,240 --> 00:29:02,840 because our population grows everyday, right? 547 00:29:02,840 --> 00:29:06,400 Like one in four Americans identify as disabled. 548 00:29:06,400 --> 00:29:10,360 So therefore we know that there's way more than that 549 00:29:10,360 --> 00:29:13,640 because unfortunately the script is still that disability is a 550 00:29:13,640 --> 00:29:17,280 bad word and that it's negative and it's gross and it's taboo 551 00:29:17,280 --> 00:29:19,320 and it's all these things. And the reality is it's just a 552 00:29:19,320 --> 00:29:23,400 beautiful part of life. And I hope one day that our 553 00:29:23,400 --> 00:29:27,120 whole society can acknowledge that like all of us at some 554 00:29:27,120 --> 00:29:29,320 point will experience disability, whether it's our own 555 00:29:29,320 --> 00:29:32,400 bodies or it's our loved ones bodies experiencing that. 556 00:29:32,400 --> 00:29:37,080 And so yeah, it's it is normal. Disability is normal. 557 00:29:37,560 --> 00:29:42,440 Non disability is abnormal. You mentioned accessibility. 558 00:29:42,640 --> 00:29:46,120 I know it's probably not where it should be, but like over 559 00:29:46,200 --> 00:29:49,000 almost the last four decades, have you noticed a pretty good 560 00:29:49,320 --> 00:29:52,200 change and positive change for people for accessibility? 561 00:29:52,320 --> 00:29:54,200 Yeah. And I would say probably our 562 00:29:54,200 --> 00:29:59,040 biggest positivity is that people are living longer. 563 00:29:59,120 --> 00:30:02,880 So then therefore, we have to be more creative, right? 564 00:30:02,880 --> 00:30:06,080 And when, when there's a need, innovation takes off. 565 00:30:06,280 --> 00:30:09,560 So that's why I love being a robotics coach and watching this 566 00:30:09,560 --> 00:30:13,560 next generation of critical thinkers and problem solvers. 567 00:30:13,720 --> 00:30:17,440 But in the same respect, it's, it's still sometimes can be like 568 00:30:18,200 --> 00:30:20,920 there's a you're the problem and we need to fix you. 569 00:30:21,560 --> 00:30:25,080 And so like that ableism, that thought process needs to be 570 00:30:25,080 --> 00:30:29,920 eradicated versus, hey, unfortunately most of America is 571 00:30:29,920 --> 00:30:33,400 inaccessible because there's stairs everywhere or it's old 572 00:30:33,400 --> 00:30:36,520 infrastructure. These places were built way 573 00:30:36,520 --> 00:30:40,840 before America was even even thought of as far as like 574 00:30:41,040 --> 00:30:44,720 colonization and civilization and in that American Western 575 00:30:44,720 --> 00:30:47,560 sense. And so I'm like, well, if they 576 00:30:47,560 --> 00:30:51,240 could figure out how to take this historic building and make 577 00:30:51,240 --> 00:30:55,040 it so people with mobility disabilities could enjoy XYZ, 578 00:30:55,600 --> 00:30:58,000 right? And then also like, hey, can we 579 00:30:58,000 --> 00:31:03,160 learn from on our indigenous communities and other ethnic 580 00:31:03,160 --> 00:31:05,880 backgrounds, right? Like because disability isn't 581 00:31:05,880 --> 00:31:11,240 always treated in many cultures as a negative stigma. 582 00:31:11,440 --> 00:31:15,520 So can we just have curious conversations with people from 583 00:31:15,520 --> 00:31:19,120 all different lived experience and then apply some of those 584 00:31:19,120 --> 00:31:23,200 things so that way we don't keep isolating folks because the 585 00:31:23,200 --> 00:31:26,760 reality is our population is growing and it is the most 586 00:31:26,760 --> 00:31:30,840 diverse minority group in the world because every human being 587 00:31:30,840 --> 00:31:34,680 at some point will be impacted by disability again, either 588 00:31:34,680 --> 00:31:37,640 their own or their loved ones. So it's just it's a mindset. 589 00:31:37,640 --> 00:31:39,480 It's a building thing. Yeah. 590 00:31:39,480 --> 00:31:41,760 So like as far as all the different devices that are out 591 00:31:41,760 --> 00:31:46,040 there now, absolutely. We've come miles and miles in 592 00:31:46,040 --> 00:31:50,920 the last four decades as far as coming up with funding to 593 00:31:51,160 --> 00:31:55,240 retrofit and make those physical spaces better. 594 00:31:55,840 --> 00:31:59,320 It's shocking because so many people have drank the kool-aid 595 00:31:59,680 --> 00:32:00,920 that think, well, we have the ADA. 596 00:32:01,240 --> 00:32:03,760 So therefore, because this new building went up there for it is 597 00:32:03,760 --> 00:32:08,240 accessible. I was like, no, because the ADA 598 00:32:08,240 --> 00:32:11,480 is again like the unfunded mandate, but it also doesn't 599 00:32:11,480 --> 00:32:16,960 have any real teeth to regards of like how do you enforce it? 600 00:32:17,480 --> 00:32:19,080 Right? It's like, not like we have like 601 00:32:19,080 --> 00:32:21,600 a fire Marshall. We don't have police. 602 00:32:21,760 --> 00:32:23,640 We don't have those kinds of things. 603 00:32:23,640 --> 00:32:26,360 And so it was set up for the fact that you have to go the 604 00:32:26,360 --> 00:32:29,440 legal route, you have to involve the Department of Justice, you 605 00:32:29,440 --> 00:32:33,000 have to have a lawyer. Like why do we have to get to 606 00:32:33,000 --> 00:32:35,000 that point? And doesn't that feel 607 00:32:35,000 --> 00:32:36,560 exhausting? Right. 608 00:32:36,560 --> 00:32:39,240 And so it's already setting us up for failure, right, because 609 00:32:39,240 --> 00:32:41,920 then you're expecting us to have the finances to go and hire a 610 00:32:41,920 --> 00:32:44,600 lawyer. We have to tell our story 20 611 00:32:44,600 --> 00:32:48,480 million times and then get the whole like, oh, well, we know 612 00:32:48,480 --> 00:32:51,280 it's going to take $200,000 to fix that, but we're just going 613 00:32:51,280 --> 00:32:54,840 to find them $200. And it's OK, They can just pay 614 00:32:54,840 --> 00:32:56,880 the fine. They don't have to fix it. 615 00:32:57,680 --> 00:33:00,000 And so I just long for the day when we will just do what's 616 00:33:00,000 --> 00:33:01,600 right. And we don't need a federal 617 00:33:01,600 --> 00:33:07,640 mandate to pretend to fix stuff. We should just figure out a way 618 00:33:07,640 --> 00:33:10,960 to make that happen. And especially because I live on 619 00:33:10,960 --> 00:33:13,840 the rugged North Shore, you know, it's like I work with 620 00:33:13,840 --> 00:33:18,120 State Park managers a lot. And there's one and he just 621 00:33:18,120 --> 00:33:20,720 always apologizes. And I'm like, you can't 622 00:33:20,720 --> 00:33:24,040 apologize for the way that the glacier came through and where 623 00:33:24,040 --> 00:33:26,040 the waterfalls are located, right? 624 00:33:26,040 --> 00:33:30,200 Like we're not expecting, I'm not expecting non disabled 625 00:33:30,200 --> 00:33:35,160 culture to go and blow up the forests to make an accessible 626 00:33:35,160 --> 00:33:38,320 paved path, to go see a waterfall that you now just 627 00:33:38,320 --> 00:33:40,160 destroyed and making it accessible. 628 00:33:40,680 --> 00:33:44,000 But I do love when you're able to promote the things that you 629 00:33:44,000 --> 00:33:48,000 do have saying like, hey, we've got hard crush granite from here 630 00:33:48,000 --> 00:33:51,680 to here and it's at this slope. And then we've got pavement from 631 00:33:51,680 --> 00:33:53,400 this to this and it's at this slope. 632 00:33:53,440 --> 00:33:56,360 I'm like, the more that you can promote, then we as a disabled 633 00:33:56,360 --> 00:33:59,880 person get to decide, is that safe for me? 634 00:33:59,880 --> 00:34:02,600 Is that accessible for me? Do I need to bring my manual 635 00:34:02,600 --> 00:34:04,000 chair? Do I need to bring my power 636 00:34:04,000 --> 00:34:05,320 chair? Do I need to bring a track 637 00:34:05,320 --> 00:34:07,120 chair? Do I need to bring my friends or 638 00:34:07,120 --> 00:34:08,679 my family? Or can I do it solo? 639 00:34:08,679 --> 00:34:12,800 Like give that dignity and agency back to folks by just 640 00:34:12,840 --> 00:34:15,440 honestly representing what you have. 641 00:34:15,960 --> 00:34:19,480 And the best way to do it is through pictures and video 642 00:34:19,480 --> 00:34:22,800 because then we can see it. And especially if you have all 643 00:34:22,800 --> 00:34:26,239 of the web accessibility, so screen readers can read it and 644 00:34:26,239 --> 00:34:28,480 tell other other folks what is there. 645 00:34:28,480 --> 00:34:31,920 But if you give that information in multiple ways, then it's up 646 00:34:31,920 --> 00:34:36,360 to us to decide what is great for us or what isn't safe. 647 00:34:36,840 --> 00:34:39,719 And then other times it's like, hey, just send an influencer in 648 00:34:39,719 --> 00:34:43,280 there with a drone one day so they can get footage so that the 649 00:34:43,280 --> 00:34:46,320 rest of us can enjoy it. Yeah, it's not as great as being 650 00:34:46,320 --> 00:34:48,960 there in person and feeling the mist of the waterfall on your 651 00:34:48,960 --> 00:34:51,120 face and hearing the birds. You know what I mean? 652 00:34:51,159 --> 00:34:54,440 But there's something there's You're showing that you want 653 00:34:54,800 --> 00:34:56,760 other folks to be in your spaces. 654 00:34:56,760 --> 00:35:00,560 So going back, you kind of mentioned you were you forced to 655 00:35:00,560 --> 00:35:03,280 retire disability because of coming back into the office, Was 656 00:35:03,280 --> 00:35:09,160 that from your teaching career? Yeah, so my medical team was 657 00:35:09,160 --> 00:35:12,840 like, you just can't. My eyes are literally at 4 foot 658 00:35:12,840 --> 00:35:15,920 2. So being AK12 music teacher with 659 00:35:15,920 --> 00:35:19,760 kids singing in my face and spitting in the face, you know, 660 00:35:19,840 --> 00:35:21,520 unintentionally. That's why you wear the hat, 661 00:35:21,520 --> 00:35:23,360 right? Just to right shield yourself. 662 00:35:24,960 --> 00:35:27,640 Well, and then I used to have a a shield that would go on my hat 663 00:35:27,640 --> 00:35:29,360 too. And until the pandemic, I never 664 00:35:29,360 --> 00:35:31,360 thought about why I was always sick. 665 00:35:31,960 --> 00:35:35,200 And then that's when I really got my experience of having an 666 00:35:35,200 --> 00:35:39,240 invisible or a non apparent disability because I'm not only 667 00:35:39,240 --> 00:35:42,800 immunocompromised from the arthritis, but from diabetes, 668 00:35:42,800 --> 00:35:44,880 from all the medications for all of that. 669 00:35:45,440 --> 00:35:50,040 And so it, it really made my friends and family and my 670 00:35:50,040 --> 00:35:54,560 providers even like, oh, oh, we just see Jenna, the strong 671 00:35:54,560 --> 00:35:59,160 verbal, fierce advocate. Not going to take crap anymore, 672 00:35:59,160 --> 00:36:01,800 person. And then you add COVID and you 673 00:36:01,800 --> 00:36:07,880 go, oh, here's this whole frailty and vulnerability that 674 00:36:07,880 --> 00:36:10,320 we've all ignored and now we can't ignore it. 675 00:36:10,760 --> 00:36:15,400 So when my counterparts were all planning to go back to the 676 00:36:15,400 --> 00:36:18,600 classroom, I just started asking questions like, hey, I literally 677 00:36:18,600 --> 00:36:22,600 bought the big soccer bubble to put on top of me on the chair. 678 00:36:23,000 --> 00:36:26,240 I figured out how I was going to put fans in there because 679 00:36:26,880 --> 00:36:30,720 putting a mask on, as most of us know, was a bear putting a mask 680 00:36:30,720 --> 00:36:34,200 and then a shield and then a soccer bubble on that's way too 681 00:36:34,200 --> 00:36:36,480 hot, right? But then it came to things like, 682 00:36:36,480 --> 00:36:38,960 hey, I can't just go to the staff room and unmask, eat 683 00:36:38,960 --> 00:36:42,480 lunch, But I also can't like unmask in my music classroom. 684 00:36:42,480 --> 00:36:47,400 We're all 300 kids that morning had just been spitting and 685 00:36:47,400 --> 00:36:50,440 breathing and all the things. So when I started asking curious 686 00:36:50,440 --> 00:36:53,160 questions of like, hey, where can I eat Harriet? 687 00:36:53,160 --> 00:36:57,560 Where can I use a restroom that 50 to 300 people already haven't 688 00:36:57,560 --> 00:37:00,120 used today? It was like, Nope, that's just 689 00:37:00,120 --> 00:37:03,320 too complex. We, there's no easy button for 690 00:37:03,320 --> 00:37:06,120 us to tap her out. And so, yeah, I was, and it was 691 00:37:06,120 --> 00:37:09,240 like a week before going back in my classroom that the 692 00:37:09,480 --> 00:37:12,200 administration came back and said we're no longer interested 693 00:37:12,200 --> 00:37:13,960 in accommodating your work from home order. 694 00:37:14,040 --> 00:37:16,880 And it was just like a slap in the face cuz I was like, I just 695 00:37:16,880 --> 00:37:19,560 was preparing. I just invested in all these 696 00:37:19,600 --> 00:37:22,000 things that I would only use in the classroom, right? 697 00:37:22,000 --> 00:37:24,640 Like, I didn't need to put the soccer mom bubble on to go to 698 00:37:24,640 --> 00:37:28,160 the doctor. So yeah, it was it was hard. 699 00:37:28,200 --> 00:37:30,440 And as I was cleaning up my space here, I was given the 700 00:37:30,440 --> 00:37:33,880 words accessibility educator. And I was like, I don't know 701 00:37:33,880 --> 00:37:37,600 what that means, right? But that was the biggest aha of 702 00:37:37,600 --> 00:37:42,240 like, just because I'm no longer a music teacher doesn't mean 703 00:37:42,240 --> 00:37:47,840 that all of my skills of being an educator and all the ways 704 00:37:47,840 --> 00:37:53,040 that my brain works now, good or bad because of that career 705 00:37:53,280 --> 00:37:56,440 doesn't mean they're gone. The district allowed me to still 706 00:37:56,520 --> 00:38:00,600 be a my middle school Lego robotics coach because my 707 00:38:00,600 --> 00:38:03,120 families and kids were still willing to mask up and we did a 708 00:38:03,120 --> 00:38:04,800 lot of stuff outdoors. And you know what? 709 00:38:04,800 --> 00:38:08,040 It's it's been a journey to get to where we are today. 710 00:38:08,040 --> 00:38:12,680 But yeah, very, very different lifestyle, very different ways 711 00:38:12,680 --> 00:38:15,360 of thinking about life and living lifeout. 712 00:38:15,680 --> 00:38:16,920 Yeah. So you probably had that 713 00:38:16,920 --> 00:38:20,480 grieving process for that point of time, but what did teaching 714 00:38:20,480 --> 00:38:23,320 it give you during all the years probably give you a pretty good 715 00:38:23,480 --> 00:38:25,920 amount of satisfaction, right? Yeah. 716 00:38:25,920 --> 00:38:28,320 And I think that was the hardest part of that transition is like, 717 00:38:28,320 --> 00:38:30,560 I also didn't get my final concert. 718 00:38:30,640 --> 00:38:33,240 I didn't get a final program. I didn't get to say goodbye to 719 00:38:33,240 --> 00:38:37,080 my kids. It was it was hellacious because 720 00:38:37,080 --> 00:38:39,800 one day a couple of my teacher friends sent me a text and I'm 721 00:38:39,800 --> 00:38:42,960 like, Jenna, can you make a video because all these kids 722 00:38:42,960 --> 00:38:45,400 thinks you died of COVID. And I was like, oh, I didn't 723 00:38:45,400 --> 00:38:48,000 even think about what the kids are thinking because they just 724 00:38:48,000 --> 00:38:51,080 see the sub in a room where I'm supposed to be Wheeling in and 725 00:38:51,080 --> 00:38:53,160 out of where I'm supposed to be singing with them. 726 00:38:53,160 --> 00:38:56,200 But you know, education in general has just helped me 727 00:38:56,200 --> 00:38:59,800 become such a lifelong learner. It's helped me learn how to take 728 00:38:59,800 --> 00:39:04,160 a step back, even through my type anus or through the I want 729 00:39:04,160 --> 00:39:06,080 to fix it or I want to make things better. 730 00:39:06,640 --> 00:39:09,320 And it's also giving me just the ability of using vocabulary in 731 00:39:09,320 --> 00:39:12,000 different ways, right? And sometimes it's through 732 00:39:12,000 --> 00:39:15,320 patience, sometimes it's through frustration, right? 733 00:39:15,840 --> 00:39:20,000 But really it just having those aha moments and helping others 734 00:39:20,000 --> 00:39:23,800 have them for themselves is just fantastic. 735 00:39:24,240 --> 00:39:27,640 And yet there's other things that I just love to do right, 736 00:39:27,640 --> 00:39:31,240 Like there's nothing like the joy of ink joy multi colored 737 00:39:31,240 --> 00:39:33,960 pens. There's nothing like so all 738 00:39:33,960 --> 00:39:36,760 those years of lesson planning, right. 739 00:39:36,760 --> 00:39:39,480 And a lot of times, not only in above and Beyond with you, but 740 00:39:39,480 --> 00:39:42,480 another nonprofit that I hope lead, you know, it's like, all 741 00:39:42,480 --> 00:39:45,640 right, let's do backward design. And all the non educators are 742 00:39:45,640 --> 00:39:47,200 like, what are you talking about? 743 00:39:47,400 --> 00:39:49,160 Right? I still hate SMART goals. 744 00:39:49,480 --> 00:39:52,120 I still hate some of those things that we as teachers just 745 00:39:52,120 --> 00:39:54,080 had to do. I still hate meetings that 746 00:39:54,080 --> 00:39:57,000 should be an e-mail. And I also hate emails that 747 00:39:57,000 --> 00:39:59,680 should be a meeting. What made you realize your voice 748 00:39:59,680 --> 00:40:02,480 and story could help others? At what point did you realize 749 00:40:02,480 --> 00:40:05,920 that that was going to be something you can use? 750 00:40:06,760 --> 00:40:08,600 We're good. Yeah, a great question. 751 00:40:09,000 --> 00:40:12,240 I would say since I was young, especially from medical 752 00:40:12,240 --> 00:40:15,000 providers, they always kept telling me that Jenny, you need 753 00:40:15,000 --> 00:40:17,040 to write a book, Jenny, you need to write a book. 754 00:40:17,560 --> 00:40:22,360 And I just like whatever I don't that doesn't that doesn't 755 00:40:22,360 --> 00:40:24,400 interest me, right. As as a young kid, like 756 00:40:24,400 --> 00:40:26,040 seriously, I have to write another thing. 757 00:40:26,080 --> 00:40:30,120 But I remember during the early pandemic, I came across an ad 758 00:40:30,120 --> 00:40:33,360 and and the person said, so do you want to make time for 500 759 00:40:33,360 --> 00:40:37,080 coffees or do you want to take the time to write a book? 760 00:40:37,560 --> 00:40:40,200 And then by writing that book, people get to know your story. 761 00:40:40,200 --> 00:40:43,440 And then there's less that you have to tell them those 500 762 00:40:43,920 --> 00:40:46,080 copies, right? Like it's kind of like your new 763 00:40:46,080 --> 00:40:49,400 version of a business card. And that really stuck with me. 764 00:40:49,400 --> 00:40:52,640 And so then that's what led to me to finally sit down and take 765 00:40:52,640 --> 00:40:55,200 that time to write my memoir, at least at that time. 766 00:40:55,200 --> 00:40:58,360 But that felt weird too, right? Like imposter syndrome galore. 767 00:40:58,400 --> 00:41:02,480 Also, at that time, I was just in my early 40s. 768 00:41:02,480 --> 00:41:04,200 It was like, but my life isn't done. 769 00:41:04,200 --> 00:41:07,560 Memoirs feel like you should write them when you're like 70 770 00:41:07,560 --> 00:41:10,720 or 80 or the doctor gives you 2 years to live or you know, those 771 00:41:10,720 --> 00:41:15,520 kinds of weird scripts that were just in my head of what a memoir 772 00:41:15,520 --> 00:41:18,360 should be. So I remember coming back to the 773 00:41:18,360 --> 00:41:20,680 high school that I graduated from, it was a different 774 00:41:20,680 --> 00:41:23,720 building, But coming back as a teacher, I remember being 775 00:41:23,720 --> 00:41:27,560 flabbergasted for the whole, like, first year or two because 776 00:41:27,560 --> 00:41:30,400 the kids were just rude. They didn't know how to like get 777 00:41:30,400 --> 00:41:32,240 out of the way in the hallway. And it wasn't that they were 778 00:41:32,240 --> 00:41:36,280 being rude intentionally. It was just a societal, cultural 779 00:41:36,280 --> 00:41:37,920 type of thing. And I wasn't used to that 780 00:41:37,920 --> 00:41:41,080 because when I was in high school, all my peers would like 781 00:41:41,080 --> 00:41:43,480 jump behind me because they knew the kids were going to get out 782 00:41:43,480 --> 00:41:46,240 of the way for me. And then I'd have this long 783 00:41:46,240 --> 00:41:48,000 stream, right? Right. 784 00:41:48,280 --> 00:41:49,960 True, because Jenna's going first. 785 00:41:50,400 --> 00:41:53,320 We're getting this. But then other kids, when I came 786 00:41:53,320 --> 00:41:55,600 back to teach, they would intentionally put their foot 787 00:41:55,600 --> 00:41:57,920 out. And so then one kid, I just, I 788 00:41:57,920 --> 00:42:00,040 just went for it. And he's like, you just ran over 789 00:42:00,040 --> 00:42:01,800 me. I'm like, you intentionally put 790 00:42:01,800 --> 00:42:03,920 it out. There's a camera right up there. 791 00:42:04,320 --> 00:42:07,200 I'm covered. You get to deal with it, right? 792 00:42:07,200 --> 00:42:09,840 And so then ever since then, I'm sure that's spread like wildfire 793 00:42:09,840 --> 00:42:13,280 of like, OK, and then the culture, right? 794 00:42:15,240 --> 00:42:18,640 I wasn't reminded, right? I'm reminded of fried green 795 00:42:18,640 --> 00:42:22,440 Tomatoes when, you know, when she pulls into that parking spot 796 00:42:22,440 --> 00:42:24,760 and she's like, I'm older and I've got more insurance. 797 00:42:24,840 --> 00:42:28,200 Yeah, that's how I I felt. But then it was amazing because 798 00:42:28,200 --> 00:42:31,720 within a year or so of me being in those spaces, the culture 799 00:42:32,160 --> 00:42:38,600 change, the behaviors change, and a lot of it is just inner, 800 00:42:38,840 --> 00:42:41,040 yeah, interpersonal communication. 801 00:42:41,040 --> 00:42:45,320 It wasn't like I did a big PSA of like, hey, stop being dumb, 802 00:42:45,400 --> 00:42:47,920 move out of the way. It just slowly changed over 803 00:42:47,920 --> 00:42:50,080 time. And so it was interesting, this 804 00:42:50,080 --> 00:42:52,480 last week, I was back in my elementary school with my 805 00:42:52,480 --> 00:42:54,760 robotics team. And again, I haven't been in 806 00:42:54,760 --> 00:42:59,320 there for almost 6 years. And it was just interesting to 807 00:42:59,400 --> 00:43:02,840 again see the culture, different adult humans, different little 808 00:43:02,840 --> 00:43:06,320 children, and yet like it felt like day one again, right? 809 00:43:06,320 --> 00:43:09,480 The pointing, the staring, the gawking, the all the things. 810 00:43:09,480 --> 00:43:10,800 But again, that's just human nature. 811 00:43:10,800 --> 00:43:12,880 That's how we learn. We learn through labels, we 812 00:43:12,880 --> 00:43:16,320 learn through names, we learn through interaction. 813 00:43:16,320 --> 00:43:19,600 And that's why it just reminds me so much that it's so 814 00:43:19,600 --> 00:43:23,360 important for everybody to be in community because a lot of times 815 00:43:23,360 --> 00:43:26,960 I'm the fish swimming upstream. But it's important to be out 816 00:43:26,960 --> 00:43:28,440 there. And for those that are, you 817 00:43:28,440 --> 00:43:31,280 know, stuck in spaces where you don't get to be in community or 818 00:43:31,280 --> 00:43:34,840 community scares the bejeevis out of you 'cause it is peopley 819 00:43:34,840 --> 00:43:37,400 and it can be negative and it can be all those things. 820 00:43:37,920 --> 00:43:40,640 I would just really strongly suggest that you don't find your 821 00:43:40,640 --> 00:43:44,400 people and have your people help be that shield and be out in 822 00:43:44,400 --> 00:43:47,720 community because that's the only way this world changes for 823 00:43:47,720 --> 00:43:52,560 the better is by us continually showing up and doing the quote 824 00:43:52,560 --> 00:43:56,800 UN quote normal things because that's just what makes the 825 00:43:56,800 --> 00:44:00,040 tapestry of our communities so much stronger and more 826 00:44:00,040 --> 00:44:02,120 beautiful. So on that note, what are some 827 00:44:02,120 --> 00:44:06,080 small things people can do to make people feel included versus 828 00:44:06,080 --> 00:44:08,720 unintentionally excluded? I think the biggest thing is 829 00:44:08,720 --> 00:44:11,320 like, how do you treat others right? 830 00:44:11,320 --> 00:44:14,360 So if you smile and wave greeting somebody in a coffee 831 00:44:14,360 --> 00:44:18,640 shop, then you should smile and wave for everybody, not just 832 00:44:18,640 --> 00:44:22,960 your bestie, not just the mayor, not just, you know, whoever that 833 00:44:22,960 --> 00:44:25,600 person might be for you, but for everybody. 834 00:44:26,000 --> 00:44:28,880 And you know, a lot of times when I'm speaking to, I talk 835 00:44:28,880 --> 00:44:31,800 about context. So if my wheelchair doesn't 836 00:44:31,800 --> 00:44:35,200 matter for a conversation, then you don't need to bring it up. 837 00:44:35,240 --> 00:44:36,840 It doesn't need to be a thing, right? 838 00:44:36,840 --> 00:44:40,480 Especially if you're all sitting down at a table for lunch or at 839 00:44:40,480 --> 00:44:43,840 a coffee, whatever. But now if like I'm Wheeling up 840 00:44:43,840 --> 00:44:47,480 to a table and there's chairs all around the table, well then 841 00:44:47,480 --> 00:44:50,000 great. Ask me, not the people I'm with, 842 00:44:50,000 --> 00:44:52,760 but ask me like, hey, Jenna, would you like me to move this 843 00:44:52,760 --> 00:44:54,480 chair? And if so, where would you like 844 00:44:54,480 --> 00:44:56,960 me to move it to? Because so often people are just 845 00:44:56,960 --> 00:44:58,600 like, oh, I'll move it. And then they move it like 846 00:44:58,600 --> 00:45:01,640 halfway across the restaurant. And I'm like, well the biggest 847 00:45:01,640 --> 00:45:06,280 thing is just asking questions and respecting the answer and 848 00:45:06,280 --> 00:45:08,640 having the patience to wait for the answer. 849 00:45:08,840 --> 00:45:12,640 I think you kind of hit on a quite a few things in a lot of 850 00:45:12,640 --> 00:45:16,120 your conversation. I think so many people in 851 00:45:16,120 --> 00:45:19,440 society have blinders on, you know, they're so engulfed in 852 00:45:19,440 --> 00:45:22,480 what they're doing, they don't even encompass some of the 853 00:45:22,480 --> 00:45:25,320 things. So sometimes, you know, you may, 854 00:45:25,320 --> 00:45:27,680 it may seem like they're rude. There's a normal head thinking 855 00:45:27,680 --> 00:45:30,880 about what they got to do, you know, and sometimes that can be 856 00:45:30,880 --> 00:45:33,640 misconstrued too. But I definitely think people 857 00:45:33,640 --> 00:45:37,440 need to start having better conversations and being more 858 00:45:37,440 --> 00:45:39,600 inclusive in those conversations. 859 00:45:39,760 --> 00:45:42,840 And one of the things that I love sharing too is a friend a 860 00:45:42,840 --> 00:45:46,880 couple years ago asked me, she said, hey, Jenna, like I know 861 00:45:46,880 --> 00:45:49,560 how I would describe you to somebody who doesn't know you, 862 00:45:50,040 --> 00:45:54,160 but how would you want me to describe you to someone who 863 00:45:54,160 --> 00:45:57,040 doesn't know you? And I thought, wow, that is just 864 00:45:57,040 --> 00:46:00,840 a really good and yet hard question, right? 865 00:46:00,840 --> 00:46:04,240 Because it made me think of like, oh, well, I don't know. 866 00:46:04,240 --> 00:46:07,120 And like that's where a lot of the things that I talk about now 867 00:46:07,200 --> 00:46:08,280 come from. Because it's like, well, 868 00:46:08,280 --> 00:46:11,160 context, if you're talking about me as a trumpet player, you 869 00:46:11,160 --> 00:46:13,640 don't need to talk about my chair really, unless you want to 870 00:46:13,640 --> 00:46:15,880 talk about the fact that I play left-handed and not right-handed 871 00:46:15,880 --> 00:46:19,520 because of my arthritis or you're trying to get a gig for 872 00:46:19,520 --> 00:46:22,720 me, right? Then they need to know I'm in a 873 00:46:22,720 --> 00:46:27,000 wheelchair and that the risers on the stage need a ramp and the 874 00:46:27,080 --> 00:46:29,560 stage itself needs accessibility. 875 00:46:29,560 --> 00:46:34,480 And you know, and so that's just a great ability to say, aha is 876 00:46:34,480 --> 00:46:38,720 just that. Can we create spaces and places 877 00:46:38,800 --> 00:46:42,480 where everybody can talk about their access needs, right? 878 00:46:42,680 --> 00:46:45,560 Because even in our conversation today, all of us do, right? 879 00:46:45,600 --> 00:46:47,960 Both of us have been shifting in our chairs. 880 00:46:47,960 --> 00:46:51,800 Both of us have needed a drink of water, Both of us have needed 881 00:46:51,800 --> 00:46:53,520 to clear our throats, you know what I mean? 882 00:46:53,520 --> 00:46:57,840 So like we all have access needs, but just making that the 883 00:46:57,840 --> 00:47:01,440 norm of, you know, even like when you sit down and even like 884 00:47:01,440 --> 00:47:03,920 that coffee example, and I'm trying to get better at this 885 00:47:03,920 --> 00:47:07,960 because I'm horrible at this is like, hey, Brad, how much time 886 00:47:07,960 --> 00:47:09,720 do you have today? Awesome. 887 00:47:09,720 --> 00:47:11,760 I want to respect your time. Thanks for letting me know we 888 00:47:11,760 --> 00:47:14,000 have this time carved out. Is there anything you want to 889 00:47:14,000 --> 00:47:17,600 make sure we really talk about? Oh, family stuff. 890 00:47:17,600 --> 00:47:19,800 Oh, yeah, you're a big fish you caught the other day. 891 00:47:19,800 --> 00:47:20,720 Awesome. Great. 892 00:47:20,800 --> 00:47:24,840 OK, you know, and and yet like also being true to myself 893 00:47:24,840 --> 00:47:27,200 because sometimes I can feel like Iggy car salesman, 894 00:47:27,200 --> 00:47:30,000 depending on my lived experiences of people who have 895 00:47:30,000 --> 00:47:32,520 done that to me. But in the same respect, I think 896 00:47:32,520 --> 00:47:34,720 it just helps frame your time together. 897 00:47:34,720 --> 00:47:39,160 It helps understand where each other's coming from instead of 898 00:47:39,160 --> 00:47:43,040 just being like, so the weather today, oh, that sports team, you 899 00:47:43,040 --> 00:47:45,760 know, and then you get done with your your conversation or your 900 00:47:45,760 --> 00:47:49,280 meeting and you're like, oh, I know nothing more about Brad. 901 00:47:49,440 --> 00:47:52,080 I know nothing more about like what we were really supposed to 902 00:47:52,080 --> 00:47:54,200 talk about. But that hour and a half coffee 903 00:47:54,200 --> 00:47:58,120 just flew away, you know? How do we move from sympathy to 904 00:47:58,120 --> 00:48:00,720 genuine understanding? I think just acknowledging the 905 00:48:00,720 --> 00:48:05,280 fact that both are there and both can be good, but both can 906 00:48:05,280 --> 00:48:09,720 be bad, right? And there are times when people 907 00:48:09,720 --> 00:48:11,400 will say things like, Oh yeah, I get it. 908 00:48:11,920 --> 00:48:16,560 And it just rolls off my rolls off my back and it doesn't even 909 00:48:16,560 --> 00:48:18,920 impact me. But I also grew up in non 910 00:48:18,920 --> 00:48:21,920 disabled culture more than I grew up in disabled culture. 911 00:48:22,640 --> 00:48:24,520 But then there are times, especially when I've been 912 00:48:24,520 --> 00:48:28,760 advocating hardcore or just at my wit's end or too much peopley 913 00:48:28,760 --> 00:48:31,520 time, right when people were like, Oh yeah, I get it. 914 00:48:31,520 --> 00:48:34,960 I understand. And I'm like, oh, Yep, we're 915 00:48:34,960 --> 00:48:39,440 around the same age. So you get the age part, but you 916 00:48:39,440 --> 00:48:42,760 don't get what it's like being a wheeled user. 917 00:48:42,800 --> 00:48:45,440 You don't get what it's like having chronic pain. 918 00:48:45,440 --> 00:48:47,960 You don't get what it's like taking 20 different medications 919 00:48:47,960 --> 00:48:50,440 a day. You know, like all the things. 920 00:48:50,440 --> 00:48:55,000 But yet do we always say that in our human nature in America? 921 00:48:55,200 --> 00:48:58,440 Well, and I think some of it too, is a lot of people, unless 922 00:48:58,440 --> 00:49:00,680 you tell them, they don't know the pain you're in. 923 00:49:01,120 --> 00:49:03,520 And sometimes you don't want to be the Debbie Downer, right? 924 00:49:03,560 --> 00:49:06,680 Hey, these are the things that affect my life, but I don't want 925 00:49:06,680 --> 00:49:09,880 to push it on the narrative to make you feel sorry for me. 926 00:49:09,880 --> 00:49:12,880 But I also want you to understand where I'm coming 927 00:49:12,880 --> 00:49:14,840 from. And I think that just takes 928 00:49:14,840 --> 00:49:17,040 time, right? And it takes trust because 929 00:49:17,040 --> 00:49:20,800 sometimes those things can then be used against us. 930 00:49:21,040 --> 00:49:23,600 If we sat down for coffee and I come in looking like half 931 00:49:23,600 --> 00:49:26,760 peaked, and I might say, hey, I've just really been going 932 00:49:26,760 --> 00:49:30,360 through a battle of pain. You know, I'm not hungover. 933 00:49:30,360 --> 00:49:33,240 I'm not all these things that you could be assuming. 934 00:49:34,320 --> 00:49:37,360 I'm just here I am, but now I'm vulnerable, you know, here I'm 935 00:49:37,360 --> 00:49:40,080 being vulnerable with you. But then the next time if we 936 00:49:40,080 --> 00:49:44,000 have coffee, but we invite a third person and you go, oh, 937 00:49:44,120 --> 00:49:48,960 third person Jenna's kind of sensitive or Jenna looks funny 938 00:49:48,960 --> 00:49:52,360 because you know, and then it's like, oh, no, don't speak for 939 00:49:52,360 --> 00:49:55,280 others, right? Don't don't add more. 940 00:49:55,280 --> 00:49:58,480 But sometimes when you know when you are that person, you're 941 00:49:58,480 --> 00:50:05,280 like, oh, OK, you just set a bad first example and that isn't 942 00:50:05,480 --> 00:50:09,640 what I needed or wanted. And now that just tainted that 943 00:50:09,640 --> 00:50:12,800 whole example. So I think a lot of times for 944 00:50:12,800 --> 00:50:15,160 folks to is like, try not to make assumptions. 945 00:50:15,160 --> 00:50:18,880 And when you catch your brain making assumptions or filling in 946 00:50:18,880 --> 00:50:22,080 those gaps, which is hard, it takes a lot of training and it 947 00:50:22,080 --> 00:50:25,280 takes a lot of what I like to call, you know, safe space or 948 00:50:25,280 --> 00:50:30,640 safe friends to be like, hey, I am working on this part of new 949 00:50:30,640 --> 00:50:33,280 vocabulary. So like a better example instead 950 00:50:33,280 --> 00:50:36,240 of being vague. Like, I know that the word crazy 951 00:50:36,640 --> 00:50:39,640 is not good. It has a bad negative thing out 952 00:50:39,640 --> 00:50:42,920 there for my friends and fellow disabled folks that have mental 953 00:50:42,920 --> 00:50:44,760 illness, mental health concerns, right? 954 00:50:45,480 --> 00:50:50,080 And yet we use that all the time or some derivation of it, right? 955 00:50:50,360 --> 00:50:54,000 And so then I've said with my close friends, I said, I want to 956 00:50:54,000 --> 00:50:56,960 eradicate that from my, my language, right? 957 00:50:56,960 --> 00:50:59,600 Like, I don't want to arbitrarily throw that word 958 00:50:59,600 --> 00:51:01,160 around. That's not good. 959 00:51:01,680 --> 00:51:05,440 And so then my, my friend the other day, she was like, so 960 00:51:05,440 --> 00:51:07,280 that's crazy, huh? I'm like, what are you talking 961 00:51:07,280 --> 00:51:08,760 about? I'm like, did I just say that? 962 00:51:08,760 --> 00:51:12,120 Because like, I didn't hear myself even use that word, 963 00:51:12,160 --> 00:51:13,320 right? Yeah, right from here. 964 00:51:13,560 --> 00:51:15,520 And out. There's no filter in that one. 965 00:51:16,000 --> 00:51:18,240 Yeah, and I had my blinders on these guys, right? 966 00:51:18,240 --> 00:51:21,480 Like I didn't hear any of that. I was like, Oh my gosh, it's 967 00:51:21,480 --> 00:51:23,640 happening without me even hearing it or seeing it. 968 00:51:23,640 --> 00:51:26,480 Because it's one thing if you do and then, you know, apologize 969 00:51:26,480 --> 00:51:31,280 for it or whatever. But I think to folks that aren't 970 00:51:31,800 --> 00:51:36,200 in those spaces, I think hearing me share that story feels very 971 00:51:36,200 --> 00:51:40,560 odd or very uncomfortable to say the least, right? 972 00:51:40,560 --> 00:51:43,240 Like I'm not going to ask my buddy to hold me accountable to 973 00:51:43,240 --> 00:51:45,800 not use this word. That's weird. 974 00:51:46,320 --> 00:51:48,560 And I was like, well, it might be weird at the beginning, but 975 00:51:48,560 --> 00:51:51,160 maybe your buddy is also struggling with something that 976 00:51:51,160 --> 00:51:54,440 you're saying or maybe they're also struggling with the words 977 00:51:54,440 --> 00:51:57,160 that they're using. So until we can have that next 978 00:51:57,160 --> 00:52:01,200 level conversation with all the people in our lives that are, I 979 00:52:01,200 --> 00:52:04,040 shouldn't say all but the trusted folks, right? 980 00:52:04,400 --> 00:52:08,760 Increase that depth and increase the ways in which we use our 981 00:52:08,760 --> 00:52:11,240 relationships and and deep in them. 982 00:52:11,280 --> 00:52:14,800 You mentioned your story, and what was it like writing within 983 00:52:14,800 --> 00:52:16,880 my spokes? I can't lie, right? 984 00:52:17,160 --> 00:52:21,200 I'm so thankful for my book coach at that time cuz she's 985 00:52:21,200 --> 00:52:24,440 like, John, I know you're a type AI know you're an educator and 986 00:52:24,440 --> 00:52:27,360 you're writing your memoir. So I bet you think you need to 987 00:52:27,360 --> 00:52:30,720 write your story chronologically and like, well, yeah, of course 988 00:52:30,720 --> 00:52:33,240 I do. And she's like, who says she's 989 00:52:33,240 --> 00:52:35,760 like, you should really write with the energy that you have 990 00:52:35,760 --> 00:52:37,400 that day and write those stories. 991 00:52:37,960 --> 00:52:41,200 So if you're excited and giddy, then write those exciting and 992 00:52:41,200 --> 00:52:43,360 giddy and mountaintop experiences. 993 00:52:43,640 --> 00:52:48,440 If you're kind of like slow and painful and you know, not really 994 00:52:48,440 --> 00:52:51,000 loving life at that moment, then those are the stories you should 995 00:52:51,000 --> 00:52:54,040 write that day because the readers will pick up if you are 996 00:52:54,800 --> 00:52:57,040 not authentic because you're going to use different words, 997 00:52:57,040 --> 00:52:58,480 you're going to use all the things. 998 00:52:59,160 --> 00:53:01,720 And that just helped me a lot. It became a bear in the editing 999 00:53:01,720 --> 00:53:04,880 process to then figure out like, well, which story goes where 1000 00:53:04,880 --> 00:53:08,480 'cause you kind of in a memoir need to be chronological for 1001 00:53:08,520 --> 00:53:12,120 your story and not do a lot of flash forward and flashbacks. 1002 00:53:12,960 --> 00:53:15,920 But to be honest, I did have to take, I think it was about 3 1003 00:53:15,920 --> 00:53:17,960 months in the process that I took off. 1004 00:53:17,960 --> 00:53:21,400 It took me a year to go from writing to published, but I took 1005 00:53:21,400 --> 00:53:23,800 three months off because I just got to a point where I'm like, I 1006 00:53:23,800 --> 00:53:27,440 am so tired of my story. I'm so tired of my voice. 1007 00:53:27,520 --> 00:53:32,440 I'm so tired of my words. And then I just picked up other 1008 00:53:32,840 --> 00:53:36,600 memoirs or other books with the disabled folks being the 1009 00:53:36,600 --> 00:53:40,160 heroines and the main characters, which thankfully 1010 00:53:40,160 --> 00:53:43,840 again today that is more found. There's more representation. 1011 00:53:43,920 --> 00:53:48,000 It's more available where when I was a kid, I never saw another 1012 00:53:48,000 --> 00:53:51,640 kid in a wheelchair in a promotional ad or in a in a book 1013 00:53:51,640 --> 00:53:54,120 or in a magazine or or any of that. 1014 00:53:54,160 --> 00:53:56,800 Finding that representation, finding other people's voices 1015 00:53:56,800 --> 00:53:59,720 during that time and then battling your imposter syndrome 1016 00:53:59,720 --> 00:54:03,920 was another hard part of it. But then also like in my naive 1017 00:54:03,920 --> 00:54:08,640 world, before being a published author, it was like, oh, these 1018 00:54:08,640 --> 00:54:10,120 authors must be writing somewhere. 1019 00:54:10,120 --> 00:54:12,280 These publishers are doing whatever, or these self 1020 00:54:12,280 --> 00:54:16,360 published people are just like books in the library, books and 1021 00:54:16,360 --> 00:54:22,200 Barnes and Noble, you know? And it's like, no, so I had a 1022 00:54:22,200 --> 00:54:26,040 large learning curve of the process and even still now, 1023 00:54:26,040 --> 00:54:29,200 right, like the whole marketing side of things and the whole 1024 00:54:29,200 --> 00:54:33,160 like all the things, like I know I'm not doing my my book and 1025 00:54:33,160 --> 00:54:35,320 story justice in that side of things. 1026 00:54:35,320 --> 00:54:37,200 But that also wasn't why I wrote it. 1027 00:54:37,200 --> 00:54:40,480 I didn't write it to be a New York Times bestseller. 1028 00:54:40,480 --> 00:54:43,000 If that happened, fantastic, right? 1029 00:54:43,120 --> 00:54:46,080 But it was more of getting the story out and promoting above 1030 00:54:46,080 --> 00:54:48,200 and beyond with you and the and the work that we do. 1031 00:54:48,320 --> 00:54:50,720 For someone listening right now, what would you say to someone 1032 00:54:50,720 --> 00:54:53,320 who feels limited by circumstances they did not 1033 00:54:53,320 --> 00:54:56,080 choose? Another good one, Brad. 1034 00:54:56,560 --> 00:55:00,440 Sorry. Too early in the morning. 1035 00:55:01,800 --> 00:55:04,400 I think that happens a lot, and I think that happens to 1036 00:55:04,400 --> 00:55:07,120 everyone, right? At a varying scale, right? 1037 00:55:07,120 --> 00:55:10,120 Some people minor, some people major, right? 1038 00:55:10,880 --> 00:55:15,880 Yeah, I think the biggest thing initially I would say if I think 1039 00:55:15,880 --> 00:55:19,960 about how I deal with that is sitting down in a space where 1040 00:55:19,960 --> 00:55:23,960 you can just be you, right? Maybe it's a quiet space with a 1041 00:55:23,960 --> 00:55:25,720 journal. Maybe it's out of the lake, 1042 00:55:25,720 --> 00:55:29,280 maybe it's out fishing, maybe it's out in the garden, whatever 1043 00:55:29,720 --> 00:55:31,560 space you feel you can be you in. 1044 00:55:31,560 --> 00:55:35,880 And then just doing an honest inventory, right, Like what do 1045 00:55:35,880 --> 00:55:39,400 you have control over? And if it's just like, so and so 1046 00:55:39,400 --> 00:55:44,640 did me wrong, IXYZ. OK, well, I can choose to harbor 1047 00:55:44,640 --> 00:55:46,400 anger. I can choose to harbor 1048 00:55:46,400 --> 00:55:49,400 bitterness. I can choose to let this wound 1049 00:55:49,400 --> 00:55:54,760 me over and over and over again. Or I could choose if it was 1050 00:55:55,000 --> 00:55:58,360 horrific long term, you know, whatever. 1051 00:55:58,360 --> 00:56:00,920 Like then I just take that person out of my life. 1052 00:56:01,280 --> 00:56:03,800 I don't need to to go back to those spaces. 1053 00:56:03,800 --> 00:56:07,320 Or maybe it's a OK, I have to look in the mirror and I need to 1054 00:56:07,320 --> 00:56:10,240 do this thing. I want to change this thing. 1055 00:56:10,240 --> 00:56:12,800 I want to take this word out of my vocabulary, you know, like 1056 00:56:12,800 --> 00:56:16,520 whatever the circumstance is, but it's finding those healthy 1057 00:56:16,520 --> 00:56:20,680 steps for you and those healthy steps for them. 1058 00:56:20,680 --> 00:56:24,400 And sometimes it can be a painful process when those 1059 00:56:24,640 --> 00:56:27,960 circumstances happen that you didn't choose. 1060 00:56:28,440 --> 00:56:31,360 And I think a lot of it is just like slow down like you're 1061 00:56:31,360 --> 00:56:34,800 talking about before so you can have those good conversations 1062 00:56:34,800 --> 00:56:37,760 with trusted people. And if you don't have a good 1063 00:56:37,840 --> 00:56:42,120 solid support system, seek out those people who, who do you 1064 00:56:42,120 --> 00:56:44,800 feel safe around? And then try to be in those 1065 00:56:44,800 --> 00:56:47,920 spaces where those types of people are and then have real 1066 00:56:47,920 --> 00:56:51,160 conversations. Like I've noticed for myself 1067 00:56:51,160 --> 00:56:55,440 recently, like a few people have come into my life and I think 1068 00:56:55,440 --> 00:56:58,280 they've put me on a pedestal or like they're seeking me to be 1069 00:56:58,280 --> 00:57:01,120 their mentor, but they haven't had that conversation with me. 1070 00:57:01,680 --> 00:57:05,160 And then that makes it really icky and really odd, right? 1071 00:57:05,360 --> 00:57:09,600 So like once you figure out that's what you're looking for, 1072 00:57:09,600 --> 00:57:12,840 then I would highly suggest people use those types of words. 1073 00:57:12,920 --> 00:57:15,320 Hey, Brad, you're a cool dude. You ask really insightful 1074 00:57:15,320 --> 00:57:17,440 questions. Would you mind having coffee? 1075 00:57:17,440 --> 00:57:18,720 Because here's what I'm dealing with. 1076 00:57:18,720 --> 00:57:21,760 And I think you might be able to help me through this like no 1077 00:57:21,760 --> 00:57:24,000 pressure, but this is just what I'm seeing. 1078 00:57:24,000 --> 00:57:26,520 And I'm just wondering if you can ask me more hard questions 1079 00:57:26,520 --> 00:57:30,160 because of XYZ, right? So words, right? 1080 00:57:30,160 --> 00:57:33,440 Too many times I use too many other times we use too little. 1081 00:57:33,440 --> 00:57:35,600 And it's never just right like Goldilocks. 1082 00:57:36,800 --> 00:57:38,040 So on that note. What do you? 1083 00:57:38,040 --> 00:57:41,360 Say to parents raising a child who feels different or struggles 1084 00:57:41,360 --> 00:57:43,640 with confidence. That's hard because I've never 1085 00:57:43,640 --> 00:57:47,720 been a biological parent, but I've been like a parent to a lot 1086 00:57:47,720 --> 00:57:51,240 of my robotics kiddos and a lot of my music students and just 1087 00:57:51,800 --> 00:57:53,320 friends kids and that kind of stuff. 1088 00:57:53,320 --> 00:57:56,160 I'm always the auntie. Your your big influence in their 1089 00:57:56,160 --> 00:57:58,760 life, right? But I also just really respect 1090 00:57:58,760 --> 00:58:02,320 the that whole biological connection because that's a lot 1091 00:58:02,320 --> 00:58:03,560 and there's a lot of power in that. 1092 00:58:04,400 --> 00:58:08,240 What I have seen modeled around me a lot from parents that I 1093 00:58:08,480 --> 00:58:14,360 highly respect is allowing your kid to, to figure out who they 1094 00:58:14,360 --> 00:58:19,560 are in a safe space, right? So, but then also understanding 1095 00:58:19,560 --> 00:58:22,840 like when it's time to kick him out of the nest and it's going 1096 00:58:22,840 --> 00:58:26,160 to hurt you way more as a parent, then it will hurt your 1097 00:58:26,160 --> 00:58:28,960 kid 'cause there are muscles that they need to strengthen. 1098 00:58:28,960 --> 00:58:33,440 There are independence things. Sometimes people just want 1099 00:58:33,520 --> 00:58:35,520 disabled folks to think they need support. 1100 00:58:35,520 --> 00:58:38,000 But every single one of us humans need support. 1101 00:58:38,440 --> 00:58:41,600 And so figuring out what is the least restrictive support that 1102 00:58:41,600 --> 00:58:44,480 they need, right? Like, OK, like you're going to 1103 00:58:44,480 --> 00:58:47,720 go and start adulting. You're going to go to college or 1104 00:58:47,720 --> 00:58:49,840 you're going to get your first apartment, or you're going to, 1105 00:58:49,960 --> 00:58:53,360 you know, or you're just going to go live in the extra cabin 1106 00:58:53,360 --> 00:58:54,920 that grandma and grandpa have, right? 1107 00:58:55,040 --> 00:58:59,400 Figure out the supports and then slowly remove the supports until 1108 00:58:59,400 --> 00:59:01,240 they can do the things. And then at some point you're 1109 00:59:01,240 --> 00:59:04,560 going to realize, like, oh, they still need this support here. 1110 00:59:04,960 --> 00:59:08,200 And that's OK, right? Like, we just have to figure out 1111 00:59:08,520 --> 00:59:11,960 where we need those supports. And I would also say, you know, 1112 00:59:11,960 --> 00:59:15,640 for caregivers and parents in this example too, is like, don't 1113 00:59:15,640 --> 00:59:18,560 forget yourself. Who do you need around in your 1114 00:59:18,560 --> 00:59:20,800 support system as you go through this? 1115 00:59:20,800 --> 00:59:23,960 Because we can't live independently through life. 1116 00:59:23,960 --> 00:59:26,520 We are all interdependent, whether we want to acknowledge 1117 00:59:26,520 --> 00:59:29,160 it or live that way or not. It's true. 1118 00:59:29,160 --> 00:59:32,160 Find those that have gone before you in those spaces. 1119 00:59:32,160 --> 00:59:34,480 That's kind of the detriment that I see in our society right 1120 00:59:34,480 --> 00:59:38,960 now, if I'm honest, is I feel like we're so segregated by our 1121 00:59:38,960 --> 00:59:43,000 age groups. Instead of reaching up to those 1122 00:59:43,000 --> 00:59:46,280 older folks and reaching down to the young ones, we just like to 1123 00:59:46,280 --> 00:59:49,560 stay in our own little pods. From what I've seen, and maybe 1124 00:59:49,560 --> 00:59:51,880 it's just a Minnesota thing. I'm not sure, but I think it's 1125 00:59:51,880 --> 00:59:54,200 larger. Jenna, where can listeners 1126 00:59:54,200 --> 00:59:56,040 connect with you and learn more about your work? 1127 00:59:56,400 --> 00:59:59,120 Yeah, best place to connect with us is our website 1128 00:59:59,120 --> 01:00:03,080 aboveandbeyondwithyou.org. You can also find us on socials 1129 01:00:03,080 --> 01:00:07,520 which is we are on Facebook, Instagram and LinkedIn and in 1130 01:00:07,520 --> 01:00:11,080 all those spaces you have ways of messaging me or emailing or 1131 01:00:11,080 --> 01:00:13,720 using the contact form and you can also see all the different. 1132 01:00:14,080 --> 01:00:17,680 Services we provide and you can also see the link to by the book 1133 01:00:17,680 --> 01:00:21,600 and all of the funds raised from the selling of the book go 1134 01:00:21,600 --> 01:00:23,680 directly to the work of above and beyond with you. 1135 01:00:23,720 --> 01:00:25,760 So please reach out and connect with us. 1136 01:00:26,000 --> 01:00:27,800 Sounds good. Well, Jenna, I appreciate your 1137 01:00:27,800 --> 01:00:31,360 time today and it was really good conversation and hopefully 1138 01:00:31,360 --> 01:00:34,480 at least we can open at least some people's perceptions to 1139 01:00:34,480 --> 01:00:37,320 what a disability is and then where people can go from there. 1140 01:00:37,560 --> 01:00:39,320 Absolutely. Thank you so much for having me, 1141 01:00:39,320 --> 01:00:41,720 Brad, and what a great conversation and very deep 1142 01:00:41,720 --> 01:00:43,680 questions. I greatly appreciate that. 1143 01:00:43,680 --> 01:00:45,640 Thank you. One of the things I kept 1144 01:00:45,640 --> 01:00:48,800 thinking about after this conversation was how easy it is 1145 01:00:49,200 --> 01:00:51,800 to underestimate the challenges that other people carry. 1146 01:00:52,400 --> 01:00:55,440 Not because we don't care, simply because we've never had 1147 01:00:55,440 --> 01:00:58,800 to experience them ourselves. Listening to Jenna talk about 1148 01:00:58,800 --> 01:01:03,080 decades of surgeries, chronic pain, accessibility barriers, 1149 01:01:03,400 --> 01:01:06,960 and the constant need to adapt made me realize how many excuses 1150 01:01:06,960 --> 01:01:09,720 disappear when you hear a story like hers. 1151 01:01:10,240 --> 01:01:13,240 Not because life suddenly becomes easy, but because 1152 01:01:13,240 --> 01:01:16,600 perspective changes everything. What stands out most about 1153 01:01:16,600 --> 01:01:20,200 Jenna's journey isn't what happened to her, it's what she 1154 01:01:20,200 --> 01:01:23,320 chose to do with it. She became an educator, a 1155 01:01:23,320 --> 01:01:27,760 leader, an advocate, someone who uses her experiences to help 1156 01:01:27,760 --> 01:01:31,480 create opportunities for others. That's a powerful reminder that 1157 01:01:31,480 --> 01:01:34,560 our struggles don't have to become the end of our story. 1158 01:01:35,160 --> 01:01:38,080 Sometimes they become the foundation for helping someone 1159 01:01:38,080 --> 01:01:40,400 else. If you'd like to learn more 1160 01:01:40,400 --> 01:01:45,640 about Jenna, her book Within My Spokes, or the work being done 1161 01:01:45,680 --> 01:01:48,760 through Above and Beyond with You, visit 1162 01:01:48,760 --> 01:01:54,000 aboveandbeyondwithyou.org. And if this conversation 1163 01:01:54,000 --> 01:01:57,680 challenged the way you think about disability accessibility 1164 01:01:57,680 --> 01:02:00,920 or what it means to truly include others, then it may have 1165 01:02:00,920 --> 01:02:03,040 accomplished exactly what it was meant to do. 1166 01:02:05,360 --> 01:02:09,400 Just a reminder, the stories and conversations in this podcast 1167 01:02:09,440 --> 01:02:12,120 are for informational and personal reflection only. 1168 01:02:12,880 --> 01:02:16,040 Nothing shared here should be taken as medical, legal or 1169 01:02:16,040 --> 01:02:19,040 professional advice. Always speak with a qualified 1170 01:02:19,040 --> 01:02:21,760 professional about your own personal situation. 1171 01:02:25,360 --> 01:02:27,280 Thank you for listening to No One Is Normal. 1172 01:02:27,720 --> 01:02:31,080 If today's message resonated with you, you can find the book 1173 01:02:31,080 --> 01:02:35,160 No One Is Normal on Amazon and Kindle and explore more 1174 01:02:35,160 --> 01:02:43,840 resources at www.bradhhill.com or www.nooneisnormal.co. 1175 01:02:44,360 --> 01:02:46,520 Remember, you weren't meant to be normal. 1176 01:02:46,880 --> 01:02:48,000 You were meant to be you.