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One Leg Up With Above And Beyond With U Founder Jenna Udenberg Powered By Podmatch 4-8-25 · OneLegUpAlex Media

0:02
Speaker 1: Here's your host, Alex Garrett. Well, before I get to
0:09
Speaker 1: my next guest here on One Leg Up with Alex Garrett,
0:12
Speaker 1: we're gonna do a memorial in a few days for
0:16
Speaker 1: one Mike Myers Radio Hope with some highlights. I've still
0:20
Speaker 1: got to compile those, but Mike, we miss you already,
0:24
Speaker 1: and I'll drop a link to Ed Delgado's remembrance of
0:27
Speaker 1: you in the podcast below. So there's that little piece
0:33
Speaker 1: of sadness to report here on One Leg Up with
0:34
Speaker 1: Alex Garrett. Mike spend a lot of time on me
0:37
Speaker 1: in the mornings before he went live with Radio Hope
0:40
Speaker 1: at about nine in the morning Eastern and eight in
0:42
Speaker 1: the morning Eastern, and I would get up really early
0:45
Speaker 1: and do the handoff from my show to his show.
0:47
Speaker 1: And he kept me company during that pandemic when everything
0:50
Speaker 1: felt very isolated, if I'm honest. So we miss him
0:53
Speaker 1: today here at the One Leg Up Network. But there
0:56
Speaker 1: is some good news to report otherwise. The Health and
1:01
Speaker 1: Human Services An HHS Secretary RFK Junior is stepping in
1:08
Speaker 1: on what's becoming a radical overhaul that's thrown home health
1:13
Speaker 1: aid situations into chaos. As CDPAP is now becoming PPL,
1:20
Speaker 1: the Public Partnership LLC. Look, when the government takes control
1:24
Speaker 1: of even home healthcare, you know that's a problem. And
1:27
Speaker 1: so hhs RFK Junior, as reported by Mike Lawler, Congressman,
1:35
Speaker 1: is on the case, and I think we should be
1:38
Speaker 1: looking into what happened with this what they're calling disorderly
1:41
Speaker 1: overhaul by Governor hokel of CDPAP. So stay tuned for that.
1:46
Speaker 1: We'll have more information on the days to come here
1:49
Speaker 1: on the adapting side of one leg up with Alex Garrett.
1:53
Speaker 1: But without further ado, my guest tonight is from Minnesota
2:00
Speaker 1: and she's powered by pod match because pod match connected
2:03
Speaker 1: me to this great guest. Her name is Jenna Utenberg
2:07
Speaker 1: and she's created a nonprofit focus right on this adaptability
2:12
Speaker 1: and accessibility right in her hometown of Minnesota. There her
2:16
Speaker 1: homesite in Minnesota. And without further Ado, the founder of
2:21
Speaker 1: the nonprofit Above and Beyond with you. Jenna Utenberg. Hey, Jenna,
2:27
Speaker 1: thanks for joining me today.
2:29
Speaker 2: Yeah, thanks for having me, Alex.
2:30
Speaker 1: This is great And Jenna, you have a great shirt
2:33
Speaker 1: if you look at the pod match profile for you,
2:36
Speaker 1: and the saying goes if you embrace diversity, but ignored disability.
2:41
Speaker 1: You're doing it wrong. We'll get into diversity a little
2:43
Speaker 1: bit later. But tell us your story. You founded above
2:46
Speaker 1: and beyond with you, you know, about five years ago
2:50
Speaker 1: or so. But this story really begins at the age
2:53
Speaker 1: of seven, doesn't it, When you were diagnosed at the
2:57
Speaker 1: time with juvenile arthritis. Tell us about your journey of
3:01
Speaker 1: adaptation from just seven years old.
3:04
Speaker 2: Yeah, so seven years old, getting ready to go to
3:07
Speaker 2: first grade one morning, and my right knee floated up
3:10
Speaker 2: to the top of the bubble bath. And like any
3:14
Speaker 2: freaked out little seven year old girl, what do I do?
3:16
Speaker 2: A yell for my mommy, Because my knee was the
3:18
Speaker 2: size of larger than American softball, and my other knee
3:22
Speaker 2: was a little kidney less than the size of a
3:25
Speaker 2: tennis ball. So that's where my journey began. I went
3:30
Speaker 2: through several different layers of being diagnosed, because back in
3:33
Speaker 2: nineteen eighty eight is when lymes disease at tickborne illness
3:37
Speaker 2: up here in northern Minnesota was coming into its own.
3:40
Speaker 2: So I had to go down to the Mayo Clinic
3:42
Speaker 2: in Rochester to have my official diagnosis down there and
3:46
Speaker 2: go through a whole battery of pretty traumatic medical tests
3:51
Speaker 2: and procedures as a little kid. That led to finding
3:55
Speaker 2: a rheumatologist up here. I'm up into Harbor, so the
3:59
Speaker 2: next closest big city is Duluth, and so follow my
4:03
Speaker 2: rimatologists that I ended up having for pretty much his
4:07
Speaker 2: whole career. He just retired about eight years ago, so
4:11
Speaker 2: he kind of became my medical dad, and a whole
4:13
Speaker 2: bunch of other medical team folks kind of became my
4:16
Speaker 2: adopted family. Because when you're you know, going to see
4:19
Speaker 2: physical therapists about three days a week every week for many,
4:23
Speaker 2: many years or decades of your life, that just happens.
4:26
Speaker 2: You know, went through some bullying stuff, you know, early
4:30
Speaker 2: on in my newly acquired disability and trying to figure
4:34
Speaker 2: out life, and you know, older peers that just really
4:38
Speaker 2: didn't get it because I was the odd one out
4:40
Speaker 2: and I was different. So you know, you're kind of
4:42
Speaker 2: a targeted young lamb when it comes to bullies and
4:47
Speaker 2: people that are not so self aware and need some training.
4:52
Speaker 2: But that was interesting things to live through and get
4:56
Speaker 2: some resilience and figure out who I was. And yeah,
5:01
Speaker 2: my medical journey took a very different turn early on.
5:05
Speaker 2: So many people want to like you know, let's do
5:07
Speaker 2: surgery for this and surgery for that. And I was
5:09
Speaker 2: very thankful to have a physical therapist early in my
5:13
Speaker 2: medical career that said to my parents of like, just
5:16
Speaker 2: be careful because everybody is going to have good intentions
5:20
Speaker 2: and they're gonna want to help, but you know, this
5:22
Speaker 2: is a newer disease. And in hindsight, I'm very thankful
5:28
Speaker 2: for that information because even now, juvenilematoid arthritis is actually
5:33
Speaker 2: either called juvenile idiopathic arthritis or just juvenile arthritis, because
5:38
Speaker 2: our disease systems just don't do the same pathway that
5:42
Speaker 2: it doesn't adults and older adults. So it's been quite
5:46
Speaker 2: the journey just in that medical side. But I'm so
5:48
Speaker 2: thankful that I don't have to just live in the
5:51
Speaker 2: medical society of disability. Like now it's like, hey, there
5:57
Speaker 2: is this whole, amazing, beautiful culture and community called disability,
6:01
Speaker 2: and so finding your people, finding people that can mentor
6:06
Speaker 2: you and bring you alongside, And it's been quite the journey.
6:12
Speaker 2: I was a music educator for over nineteen years. Love music.
6:16
Speaker 2: I love middle school kids. Everybody thinks I'm weird for
6:18
Speaker 2: love of middle schoolers, But when you have a chronic
6:21
Speaker 2: disease that ac gives you lots of pain and fatigue.
6:25
Speaker 2: Middle Schoolers have a lot of extra energy, a lot
6:27
Speaker 2: of extra sarcasm, a lot of extra curiosities about life.
6:32
Speaker 2: So middle school was my jam for a long time.
6:36
Speaker 2: But I actually was a k told music educator, both
6:38
Speaker 2: instrumentally and for general music and choir. So using both
6:43
Speaker 2: of my under.
6:44
Speaker 1: The music help you get through what you are going
6:47
Speaker 1: through in your journey, The music help you express yourself.
6:50
Speaker 2: Yeah. Absolutely, it was like the equal playing field once
6:53
Speaker 2: I had that trumpet in my hands. You know, I
6:55
Speaker 2: was the lead trumpet player. So it wasn't just that
6:58
Speaker 2: I was equal, but I was actually developing my leadership
7:01
Speaker 2: skills and found additional value in a worth in who
7:05
Speaker 2: I was and the talents and gifts that I had.
7:09
Speaker 2: So yeah, that was a huge difference in my life
7:13
Speaker 2: for sure.
7:14
Speaker 1: So nineteen year career. Does that mean you go from
7:18
Speaker 1: the school system to creating this nonprofit By the way,
7:21
Speaker 1: congratulations on nineteen years as a music educator.
7:25
Speaker 2: Yeah. So during the pandemic, I worked from home like
7:28
Speaker 2: a lot of folks did, and I think it was
7:31
Speaker 2: like year two to year three my district came back
7:34
Speaker 2: and said they weren't interested in my work from home orders,
7:37
Speaker 2: and so I started the journey of being an early
7:41
Speaker 2: retiree on disability. Retirement and dealing with systems is nothing
7:46
Speaker 2: new to me. Been dealing with lots of broken and
7:50
Speaker 2: non helpful systems, and yet once you get through all
7:52
Speaker 2: the hoops and they become helpful type systems throughout most
7:55
Speaker 2: of my life. But that was the first time that
7:58
Speaker 2: my invisible disability of being immunal compromise from my diseases
8:03
Speaker 2: and the medications I take became more of my identity
8:06
Speaker 2: and things that I had to figure out how to
8:08
Speaker 2: navigate and help others learn to navigate with me. Because
8:11
Speaker 2: being a manual wheelchair user since age eight, I'm so
8:14
Speaker 2: used to everybody seeing the wheels and making assumptions good, bad,
8:18
Speaker 2: or otherwise, and this was different. This was you know,
8:22
Speaker 2: I still wear a mask out in public. You know
8:24
Speaker 2: all the different things I need to do to protect
8:26
Speaker 2: my health. But it was an identity crisis for me
8:29
Speaker 2: for sure. After a nineteen year career, like I said,
8:32
Speaker 2: after hanging out with middle schoolers doing all their things,
8:36
Speaker 2: I still am able to be a middle school lego
8:39
Speaker 2: robotics coach for a district and some of that brings
8:41
Speaker 2: a lot of joy and purpose and passion and doing
8:45
Speaker 2: that for twelve years now and just great, great things.
8:50
Speaker 2: But so anyways, I was a twenty twenty Bush Fellow
8:52
Speaker 2: and during that time was when I went through my
8:55
Speaker 2: identity crisis and change of jobs and all of the things.
8:58
Speaker 2: And I was given the term analogy accessibility educator and
9:02
Speaker 2: that really stuck with me because that's what does make
9:05
Speaker 2: me and my nonprofit different is that you know, years
9:09
Speaker 2: of education and we're especially public education, working with so
9:13
Speaker 2: many different demographics, different folks, different stories, different needs. It
9:20
Speaker 2: really sets us apart and unique and we can see
9:22
Speaker 2: things from a varied lens. So my board has nine
9:26
Speaker 2: of us, and all of us have some kind of
9:28
Speaker 2: connection to education, whether it's occupational therapists that work in
9:33
Speaker 2: a school setting, former adaptive pe teachers, former administrators, current
9:39
Speaker 2: leaders of early childhood education, para professionals, and another fellow
9:45
Speaker 2: music educator, So lots of experience in that above and
9:49
Speaker 2: beyond with you stands for the fact that we can
9:51
Speaker 2: go above and beyond the EIGHTYA Code, the Americans with
9:54
Speaker 2: Disabilities Act, that we want to embrace the spirit of it.
9:58
Speaker 2: Which was the whole intent of the law and of
10:00
Speaker 2: the many codes that people can.
10:05
Speaker 1: Abide by, you know, on that vein. I see also
10:08
Speaker 1: your nonprofit teachers accessibility, talk about that part because as
10:13
Speaker 1: you know, my my main tenants are adaptability, accountability, and accessibility,
10:17
Speaker 1: So talk about the accessibility uh portion.
10:20
Speaker 2: Yeah, So you know, we really embrace the fact that
10:23
Speaker 2: we are not a checklist. So so many times when
10:26
Speaker 2: people pull out the ADA code, they're like, oh, but
10:28
Speaker 2: I am you know, I have these grab bars and
10:30
Speaker 2: they're from this many inches to that many inches and
10:33
Speaker 2: you know, all the different things that code set. But
10:36
Speaker 2: the reality is is that all of our human bodies
10:39
Speaker 2: come in different shapes, different sizes, different abilities, different lengths,
10:42
Speaker 2: different you know, heights, all those things, and so embracing
10:46
Speaker 2: universal design, embracing the spirit of the ADA and working together.
10:51
Speaker 2: So the way you part of it is a nod
10:53
Speaker 2: to my music career because you know, little five year
10:56
Speaker 2: old kindergarteners can't say Udenberg very well, so they change
10:59
Speaker 2: my nam to miss you. And so one of our
11:02
Speaker 2: big tenants, similar to yours, Alex, is that we want
11:05
Speaker 2: to be working with people. So we work with you know,
11:09
Speaker 2: state agencies, and organizations. We work with small businesses and
11:13
Speaker 2: civic groups. We work with individuals and other spaces and
11:17
Speaker 2: community that just need to become more accessible and more
11:20
Speaker 2: inclusive and creating more sense of belonging for everyone, including
11:24
Speaker 2: people with disabilities.
11:28
Speaker 1: You know.
11:28
Speaker 2: So, and I'm also very clear in all of our
11:31
Speaker 2: work that you know right now, our nonprofit is primarily
11:34
Speaker 2: focused on mobility disabilities. It doesn't mean that we focus
11:38
Speaker 2: on other parts of disability community and culture, but that's
11:42
Speaker 2: our lived story currently for a few of our members
11:44
Speaker 2: on the board. So we want to be authentic and
11:47
Speaker 2: true in the work that we do, and we also
11:49
Speaker 2: want to be a conduit to other aspects of disability
11:52
Speaker 2: community and culture. You know.
11:53
Speaker 1: Also, it sounds like with this program you're trying to
11:56
Speaker 1: empower others with disabilities to become advocates as well. Is
12:00
Speaker 1: that right?
12:02
Speaker 2: Absolutely? You know, we're we're starting our third year this month,
12:06
Speaker 2: so we're growing, we're moving and shaking, We're trying to
12:11
Speaker 2: find you know, we're in rural Minnesota, so finding the
12:13
Speaker 2: isolated pockets of where folks with disabilities live, work and
12:18
Speaker 2: thrive can be more of a challenge. So that's one
12:24
Speaker 2: of the struggles we're trying to overcome. So yeah, so
12:26
Speaker 2: we're trying to get our message out there, our presence
12:29
Speaker 2: out there, so that way people can come to us,
12:32
Speaker 2: so we can elevate and amplify their story.
12:35
Speaker 1: And you talk about amplifying people's story, I imagine that
12:39
Speaker 1: Minnesota is not always as accommoding as it is in
12:43
Speaker 1: New York. So what has the process been like to
12:46
Speaker 1: make sure Minnesota firstly is more accessible to those disabilities.
12:50
Speaker 2: Yeah, I think you know, we have rugged terrain, and
12:54
Speaker 2: you know, our especially up in northern Minnesota, we're a
12:58
Speaker 2: lot like Sweden and Norway and some of the Scandinavian countries,
13:03
Speaker 2: and so trying to find ways that embrace our natural
13:08
Speaker 2: beauty but also create accessibility in the many forms that
13:13
Speaker 2: that can look like and should look like. Is just
13:16
Speaker 2: making sure that we're at the table at all levels
13:19
Speaker 2: of decision making so that way we can make the
13:22
Speaker 2: best physical and attitudinal spaces for folks with disabilities.
13:28
Speaker 1: As a founder of this nonprofit, by the way, you
13:30
Speaker 1: have one leg up in the accessibility space, So how
13:34
Speaker 1: do you help inspire others to have that same one
13:38
Speaker 1: leg up, disabled or able bodied and become that entrepreneur
13:42
Speaker 1: and have that entrepreneurial spirit as you do, Jenna.
13:45
Speaker 2: Yeah, for me, it's allible community, like above and beyond
13:48
Speaker 2: with you would not exist today if it wasn't for
13:51
Speaker 2: lots of people encouraging me to do this work, if
13:54
Speaker 2: it wasn't for a good friend of mine who helped
13:56
Speaker 2: me wordsmith all of our titles, you know, whether it's
13:59
Speaker 2: from our nonprofit voice, from our title of my memoir
14:05
Speaker 2: to the title of a column that I do in
14:07
Speaker 2: our local newspaper, like it's all about community and also
14:11
Speaker 2: above and beyond with you wouldn't exist if I wasn't
14:14
Speaker 2: able to be connected to other nonprofits who have done
14:17
Speaker 2: this work before, and that we're willing to literally sit
14:22
Speaker 2: and stand by me throughout that whole process of creating
14:26
Speaker 2: the articles of incorporation and creating the bylaws and doing
14:29
Speaker 2: all the hard work, and also knowing that, you know,
14:32
Speaker 2: they were super flexible, knowing that my nonprofit wasn't going
14:36
Speaker 2: to look like their nonprofit and my board isn't going
14:38
Speaker 2: to function necessarily exactly the same way as theirs. So
14:42
Speaker 2: finding those right people at the right time to come
14:44
Speaker 2: alongside you and not just encourage, but also give you
14:48
Speaker 2: the skills that you need and also being willing to
14:52
Speaker 2: borrow their skills to you. And maybe that's a skill
14:54
Speaker 2: set that's going to take a while to develop. But yeah,
14:58
Speaker 2: I'm so very thankful for all those peop that I've
15:00
Speaker 2: come alongside in this whole part of the journey.
15:04
Speaker 1: So you were seven years old when this arthritis hit you.
15:07
Speaker 1: But I have to ask you your motivation for those
15:10
Speaker 1: who may have something come up later in life, like
15:12
Speaker 1: have to adapt something later in life and then lose
15:14
Speaker 1: motivation to continue, what's your message to them? Because you
15:17
Speaker 1: did not lose your motivation to stay active at seven?
15:20
Speaker 1: Am I right? I mean you didn't lose that motivation
15:22
Speaker 1: at all.
15:24
Speaker 2: Not really. I mean I did go through a pretty
15:26
Speaker 2: deep depression when I was fifteen, and for me, I
15:29
Speaker 2: found my faith during that time. And so for me,
15:33
Speaker 2: you know, that part of my life has really been
15:36
Speaker 2: what's gotten me through a lot of the dark times,
15:38
Speaker 2: a lot of the hard times. I've been given an
15:40
Speaker 2: amazing support system through chosen family, through biological family, through
15:45
Speaker 2: church family. So it's really just finding you know, where
15:51
Speaker 2: where you're supported, where you belong, where you're valued. And
15:56
Speaker 2: then also you know, we all have the ability to
15:58
Speaker 2: give back value to others too, So it's a two
16:02
Speaker 2: way street, right, So finding those relationships and friendships that
16:07
Speaker 2: can support you, but also that you can support because
16:09
Speaker 2: we all have purpose and we all need to be
16:11
Speaker 2: a part of community.
16:13
Speaker 1: And speaking of community, a shout out to pod Match,
16:15
Speaker 1: who's really connected me with folks like yourself who are
16:18
Speaker 1: like minded and have that stake in the ground in
16:23
Speaker 1: the accessibility space and you speak on it and write
16:29
Speaker 1: on it. So I got to talk about the writing
16:31
Speaker 1: part within my spokes is the book you wrote about
16:35
Speaker 1: your journey? Tell us about the book a little bit more.
16:38
Speaker 2: Yeah, So since I was a young kid, I had
16:40
Speaker 2: many people, especially in my medical team, being like Jenna,
16:42
Speaker 2: you need to write a book. Jenna, you need to
16:43
Speaker 2: write a book. You have such great humor and you
16:45
Speaker 2: just see life in different ways and you always make
16:48
Speaker 2: lemonade out of lemons. And you know, some of those
16:50
Speaker 2: are ablest comments, but some of them were just real
16:53
Speaker 2: and true and authentic as well. Right. So I had
16:57
Speaker 2: dabbled with it, I had thought about it, but it
16:59
Speaker 2: wasn't un tell my Bush Fellowship where I actually had
17:02
Speaker 2: everything come together so they were able to help fund
17:05
Speaker 2: the education behind it. So I was a part of
17:08
Speaker 2: a self publishing school and had some writing coaches and
17:13
Speaker 2: got connected with a local editor who was also a friend,
17:16
Speaker 2: but I didn't know she had those skills at that time,
17:18
Speaker 2: and that was a great partnership. Writing the book was
17:21
Speaker 2: hard because I had to you know, refaith yet again
17:26
Speaker 2: some of those hard stories. But I knew that those
17:28
Speaker 2: stories were needed to be shared and they were no
17:31
Speaker 2: longer open wounds for me, but they were scars where
17:33
Speaker 2: I find my strength and where I am remembered of
17:37
Speaker 2: the resilience that I've been given and of you know,
17:41
Speaker 2: just that I can overcome the next thing because I
17:45
Speaker 2: have overcame other things before, and I don't overcome my
17:48
Speaker 2: disability because there's no such thing.
17:51
Speaker 1: Strength that's so powerful. Jenna. Now, I got to ask
17:53
Speaker 1: you this because Minnesota winders are not kind to anybody, right,
17:57
Speaker 1: So how was that navigating? You know, you get those
18:00
Speaker 1: are artist then you I'm sure you ended up in
18:03
Speaker 1: the wheelchair and whatnot. So talking about the navigation of
18:06
Speaker 1: Minnesota in the winter, I'm I'm dying no action.
18:11
Speaker 2: Yeah, winter sucks. Sorry if that's a bad word for
18:13
Speaker 2: your podcast, but it is not fun, It is not friendly.
18:18
Speaker 2: It is beautiful. That's actually when I wrote most of
18:21
Speaker 2: my book because I'm more inside. I'm you know more
18:25
Speaker 2: It's very dark here in the winter, so that can
18:27
Speaker 2: cause some some things for folks. And uh yeah, accessibility,
18:33
Speaker 2: you know, it is getting better through people sharing their
18:36
Speaker 2: story and sharing their struggles and complaining to local agencies
18:42
Speaker 2: and entities of that curb cuts need to be wowed out,
18:46
Speaker 2: and not just like the actual like raised domes part
18:50
Speaker 2: of the curb cut, but literally from the crosswalk through
18:55
Speaker 2: the curb cut and then the whole sidewalk. Another struggle
18:59
Speaker 2: that I face the van user because I independently drive
19:02
Speaker 2: my van, is that a lot of sidewalks they just
19:04
Speaker 2: let the snow pile up, even on the edges of
19:08
Speaker 2: accessible parking spots, and it's like, nope, all of the
19:11
Speaker 2: sidewalks and boulevards need to be cleared, especially where there's
19:14
Speaker 2: cement or whatever so that you know, vans can drop
19:18
Speaker 2: their lifts and that kind of stuff. And even if
19:21
Speaker 2: it's not a sidewalk situation like it's it's hard for
19:25
Speaker 2: them to keep up with like clearing things. But then
19:28
Speaker 2: it's also hard like other disabled folks that are driving,
19:31
Speaker 2: I always tend to park on the access aisles and
19:35
Speaker 2: those spaces, which actually blocks me also out of my vehicle.
19:38
Speaker 2: So it's not only the choices of the non disabled folks,
19:41
Speaker 2: but it's also our own kind of doing things to us,
19:45
Speaker 2: and sometimes out of their own necessity, and other times
19:48
Speaker 2: it's just out of our own ignorance, because even though
19:50
Speaker 2: we're disabled, we can still be ignorant about things. Right. So, yeah,
19:54
Speaker 2: winter isn't fun in the accessibility sense, but it is
19:57
Speaker 2: a beautiful time to be here in northern Minnesota, and
20:02
Speaker 2: I love the invention of drones and photography and all
20:05
Speaker 2: the things that local artists bring to the beauty of
20:08
Speaker 2: winter for me, So I don't always see it as
20:10
Speaker 2: a complete negative for accessibility, but I can appreciate it
20:14
Speaker 2: for others.
20:15
Speaker 1: And by the way, you mentioned robotics, but I didn't
20:18
Speaker 1: know the robotics team was sponsored by Lego. You're part
20:21
Speaker 1: of a Lego sponsored robotics team, tell us more about that.
20:25
Speaker 2: I've been coaching a Lego robotics team for twelve years
20:27
Speaker 2: up here called the Robo Dweebs, and it's just a
20:31
Speaker 2: great program through First, which is an international nonprofit to
20:36
Speaker 2: create stem and steam experiences for students, and they've got
20:40
Speaker 2: worlds coming up. So if anybody is big into robotics,
20:44
Speaker 2: and it's not just the big bots that high schoolers
20:46
Speaker 2: and others do, but it goes all the way down
20:49
Speaker 2: to Lego Robotics, and you can find that online. Actually
20:53
Speaker 2: the weekend of Easter, so two weekends from now, it's
20:56
Speaker 2: happening down in Houston, Texas. To check out those things
21:00
Speaker 2: and see that amazing world of robotics.
21:03
Speaker 1: Now, I want to know, because I was just in
21:05
Speaker 1: Washington for advocacy work. I'm having a digestive disease. Natural
21:08
Speaker 1: coalition is taking your mission to Washington something on your
21:13
Speaker 1: you know, bucket list as a goal slash? Have you
21:16
Speaker 1: taken this to the state capitol of Minnesota already? Have
21:18
Speaker 1: you been talking with legislation about all of this?
21:22
Speaker 2: Honestly, I haven't yet. And as I was designing Above
21:25
Speaker 2: and Beyond with you and going through my Bush Fellowship,
21:28
Speaker 2: that was a really hard thing because I feel like
21:31
Speaker 2: I could have gone either way while whether I wanted
21:34
Speaker 2: to be, you know, working with legislation or being wheels
21:37
Speaker 2: on the ground. And at least currently I'm working at
21:39
Speaker 2: wheels on the ground and that's where my passion gets stoked.
21:44
Speaker 2: That's where I feel like I'm making the biggest difference currently.
21:49
Speaker 2: It's not that I'm not opposed to going to the Capitol.
21:54
Speaker 2: I'm not opposed to going to Washington, d C. When
21:56
Speaker 2: that time is right, but I don't feel like that
21:58
Speaker 2: time is right yet. So working on my leadership skills.
22:03
Speaker 2: I'm a part of the Shannon Leadership Institute in twenty
22:05
Speaker 2: twenty five and just need to get some of my
22:08
Speaker 2: own medical things shored up so that way I can
22:11
Speaker 2: be the best advocate and activists that I can be,
22:14
Speaker 2: and also pacing myself because yeah, I struggle in that area.
22:20
Speaker 1: I'm sure. Also part of this was the healthcare cost
22:23
Speaker 1: that you were undergoing even as the kids do all this.
22:27
Speaker 1: Is it possible that that's been AI as well to
22:30
Speaker 1: get this mission going above me on to make sure
22:33
Speaker 1: healthcare costs are at a better low for those visibilities.
22:37
Speaker 2: Yeah, I mean, you know, we all live in the complex.
22:39
Speaker 2: It's you know, systems, right, and so it's bringing light
22:43
Speaker 2: to the parts of the systems that work well for
22:45
Speaker 2: us and bringing to light the things that are very
22:49
Speaker 2: dehumanizing and lack dignity for us. So again, it's just
22:55
Speaker 2: all about all of us sharing our stories so we
22:58
Speaker 2: can get to the heart of the policies and legislation
23:01
Speaker 2: that are making huge impacts on all of our lives.
23:04
Speaker 2: And you know, in our current situations of uncertainty and
23:07
Speaker 2: things that are happening, it is scary, it is concerning.
23:10
Speaker 2: I have a medical surgery coming up, and I'm a
23:14
Speaker 2: medicaid person as well as personal insurance, and so there's
23:18
Speaker 2: a lot of stuff happening and a lot of stuff
23:20
Speaker 2: that we need to keep fighting for and trying to
23:27
Speaker 2: not get so bogged down in the things that could be,
23:31
Speaker 2: but making sure we're making the action steps of the
23:33
Speaker 2: next right step at the next right time to fight
23:36
Speaker 2: these fights.
23:38
Speaker 1: All right, So I saw your shirt once again and
23:41
Speaker 1: I referenced it earlier. If you embrace diversity but ignore disability,
23:45
Speaker 1: you're doing it wrong. So where are we getting it
23:47
Speaker 1: wrong with DEI? And is it also wrong that DEI
23:53
Speaker 1: is being eliminated? Where are we getting it right? Where
23:55
Speaker 1: are we getting it wrong here? Jenna?
23:57
Speaker 2: That is a loaded question, you know, like like any label,
24:03
Speaker 2: like any system, like any process, there are good ones
24:08
Speaker 2: and there are bad ones. And to be honest, many
24:12
Speaker 2: times I get frustrated by DEI because they don't have
24:15
Speaker 2: the A in there, so accessibility has to be a
24:18
Speaker 2: part of it. And I had a good friend of
24:20
Speaker 2: mine in training one time standing up to her facilitator
24:25
Speaker 2: who was doing DEI training, and she's like, and accessibility,
24:28
Speaker 2: and like the lady was just like, no, it's included
24:31
Speaker 2: in inequity. And then as I kept going through the training,
24:35
Speaker 2: my friend just kind of kept being the thorn in
24:37
Speaker 2: her side of like, okay, and how does this relate
24:40
Speaker 2: to the disability community and culture? Like where is the
24:44
Speaker 2: accessibility in what you're talking about?
24:46
Speaker 1: And so.
24:50
Speaker 2: Yeah, you know, like in your question, I think it.
24:52
Speaker 2: I think it's been portrayed as both. I think it's
24:54
Speaker 2: been lived out as both. And really it just comes
24:59
Speaker 2: down to like can we just see people for people?
25:02
Speaker 2: Can we see workers for workers? Can we see that
25:04
Speaker 2: we all have needs, we all need support systems, And
25:07
Speaker 2: it's all going to look different depending on if you're
25:09
Speaker 2: disabled or not disabled, depending on what your religious background is,
25:14
Speaker 2: depending on what your ethnic background is, your racial background, Like,
25:17
Speaker 2: we all come to the table in different ways, presenting
25:21
Speaker 2: with different needs, presenting with different lived experiences and traumas.
25:26
Speaker 2: So let's just have curious conversations. Let's be real and authentic,
25:29
Speaker 2: and let's figure out that everybody has strengths and everybody
25:33
Speaker 2: has weaknesses, and so we're all meant to be together
25:36
Speaker 2: in community moving forward. So often in disability community, we're
25:40
Speaker 2: finding that so many people are trying to recreate the wheel,
25:43
Speaker 2: and then we're expending energy in places we don't need to.
25:47
Speaker 2: So early on in Above and Beyond with you, we
25:49
Speaker 2: said we can't be all things and do all things,
25:52
Speaker 2: but we need to really focus on what we're supposed
25:55
Speaker 2: to be doing and then amplifying and lifting up those
25:57
Speaker 2: that are doing the other work that we wish we
26:00
Speaker 2: could do or we see as really valuable, but that's
26:02
Speaker 2: not what we're currently called to be doing. So we're
26:05
Speaker 2: just trying to create that umbrella of you know, making
26:08
Speaker 2: sure that all the players are at the table and
26:10
Speaker 2: we're all connected so we can all do the work
26:12
Speaker 2: better together.
26:13
Speaker 1: You mentioned faith, and I really believe God makes us
26:16
Speaker 1: who we are, you know, and puts in these situations.
26:19
Speaker 1: And some of the Zaba community do not believe that.
26:22
Speaker 1: So how do you do you try and bring faith
26:25
Speaker 1: to the table or when you work with your nonprofit
26:28
Speaker 1: when you talk with people or is that sort of
26:30
Speaker 1: just in your heart?
26:32
Speaker 2: Well, for me, you know, I believe that my faith
26:34
Speaker 2: drives all of my decisions and the way that I
26:37
Speaker 2: talk and engage with folks. I mean, of course that's
26:41
Speaker 2: you know, the heart of what that means for me.
26:45
Speaker 2: But it definitely inspires the work. But it isn't an
26:50
Speaker 2: you know, an in your face part of the work
26:53
Speaker 2: that we do. Right, So again, you know, I feel
26:58
Speaker 2: like it's it's my short that store sorry that I
27:00
Speaker 2: can share based on what is needed at the time,
27:04
Speaker 2: and also helping folks where they're at and what they need,
27:08
Speaker 2: you know. And if that's part of hearing the story
27:10
Speaker 2: of my faith and how I came to where I
27:12
Speaker 2: am and where I'm going, I'm more than willing to
27:15
Speaker 2: share and talk about that.
27:17
Speaker 1: All right, where you're going, So talk about where you'd
27:19
Speaker 1: like to see above and beyond with you ten years
27:23
Speaker 1: from I know, I know if you get that asked
27:24
Speaker 1: a lot, but I'm curious now you mention where we're going.
27:28
Speaker 2: Yeah, interestingly, enough above them begin with. You just went
27:31
Speaker 2: through strategic planning, so we're waiting to hear some of
27:34
Speaker 2: the highlights from that. But the whole impetus behind Above
27:39
Speaker 2: and Beyond with You was that, you know, the Americans
27:42
Speaker 2: with Disabilities Act is the largest unfunded mandate that the
27:46
Speaker 2: United States government has ever created. So, especially in rural America,
27:52
Speaker 2: how do these small mom and pop businesses that are
27:55
Speaker 2: barely keeping their doors open and they want to have
27:58
Speaker 2: a ramp, you know, instead of three stairs to get
28:00
Speaker 2: in their establishment, or they want to have an accessible
28:03
Speaker 2: bathroom in their restaurant, but the expense of you know,
28:08
Speaker 2: being closed down to retrofit and do all the things.
28:12
Speaker 2: So I really my first impetus in creating Above and
28:17
Speaker 2: Beyond with You is trying to figure out how in
28:19
Speaker 2: the nonprofit sector can we create or obtain finances to
28:24
Speaker 2: then do like mini grants or some kind of funding
28:28
Speaker 2: system to come alongside these other spaces that don't have
28:31
Speaker 2: access to grants and don't have access to other funding opportunities,
28:36
Speaker 2: and then also pooling those resources together to work with
28:40
Speaker 2: the other local businesses that provide those construction things, those
28:44
Speaker 2: consulting things, those you know, building and architecture things like
28:48
Speaker 2: how can we all come together to make communities and
28:51
Speaker 2: spaces more physically accessible. And then Above and Beyond with
28:56
Speaker 2: you and other training consulting types oranizations can come alongside
29:01
Speaker 2: and help fix those attitudinal barriers and really get rid
29:05
Speaker 2: of the stigma thinking that disability is a bad word.
29:09
Speaker 1: Now, you know, I love about that because I feel
29:11
Speaker 1: like people disabilities intend to rush and use the idea
29:14
Speaker 1: against a small business instead of working with them. And
29:16
Speaker 1: here you're saying, now, let's work alongside them, let's not
29:19
Speaker 1: punish them for not having the resources, and maybe, dare
29:23
Speaker 1: I say the knowledge of it? I mean, I do
29:26
Speaker 1: feel like you're trying to work alongside them, not weaponize
29:28
Speaker 1: the idea against them. Am I right?
29:31
Speaker 2: Absolutely? And it's such a messed up system that the
29:33
Speaker 2: only way you can get something to change is by
29:35
Speaker 2: suing through the through the Department of Justice, or that
29:39
Speaker 2: was our old way of doing it, right, Like how
29:41
Speaker 2: much money are we wasting? How much time are we wasting?
29:44
Speaker 2: And how much relationships are we demolishing instead of just
29:49
Speaker 2: coming along aside each other? And I think we also
29:52
Speaker 2: are dealing with a lot of the misinformation that you
29:56
Speaker 2: know that people disabilities don't have buying power, that people
29:59
Speaker 2: with disabilit don't go on vacations, the people with disabilities
30:02
Speaker 2: are all these things, which some of that is very
30:05
Speaker 2: true of many of our disabled counterparts live, you know,
30:09
Speaker 2: after below the poverty level because of the systems in
30:12
Speaker 2: which we put on top of folks that are disabled,
30:15
Speaker 2: and there are so many others that you know, are
30:19
Speaker 2: able to do all those things. I mean, we have
30:21
Speaker 2: the baby boomers coming through now and they're going to
30:23
Speaker 2: be experiencing just the everyday life acquiring of disabilities, and
30:28
Speaker 2: so we're at a really pivotal time I think in
30:31
Speaker 2: America for sure of we can make things so much
30:34
Speaker 2: better if we all come together. And so that's just
30:37
Speaker 2: my hope in the next five to ten years, is
30:39
Speaker 2: that we break down those walls and those silos and
30:42
Speaker 2: that we actually see that it doesn't matter if you've
30:45
Speaker 2: had your disability since birth, or that you acquired it
30:48
Speaker 2: in middle aged or you acquired it you know in
30:50
Speaker 2: your older days, that it all doesn't matter because we're
30:55
Speaker 2: all disabled, we all need similar things. So let's just
30:58
Speaker 2: make this world a better place.
31:00
Speaker 1: I'm going to connect you with our our friend Eric Ryan,
31:03
Speaker 1: who runs Tripper Corp in New York City slash On
31:07
Speaker 1: Island because quite frankly, there are no way vehicles available
31:11
Speaker 1: through with or uber on Long Island. So my friend
31:13
Speaker 1: Eric created a tripper. I feel like you two would
31:15
Speaker 1: be a great connection to make because I'm sure you're
31:18
Speaker 1: also trying to get adapted. You know, cesco way access
31:22
Speaker 1: in Minnesota. That's a big push for you guys as well, right,
31:27
Speaker 1: or maybe you want to get into that space.
31:28
Speaker 2: Yeah, I mean, transit is a huge thing. And to
31:32
Speaker 2: be honest, because I've been blessed with having my own
31:34
Speaker 2: vehicles for so many years that that meet my needs,
31:39
Speaker 2: I in my own ignorance, have you know, pushed myself
31:42
Speaker 2: to try to use public transit in some of our
31:44
Speaker 2: bigger cities and using transit even in rural Minnesota. And
31:48
Speaker 2: it's such a disparity and it's such a need and
31:51
Speaker 2: it's such a barrier for so many people, whether it's socioeconomic,
31:56
Speaker 2: whether it's disability. Like, yeah, that's just huge. And even
32:00
Speaker 2: when we're trying to plan events, like we're now being
32:02
Speaker 2: very aware of like what are the barriers around getting here?
32:06
Speaker 2: Let alone, once people are here, can they do all
32:09
Speaker 2: the things that this event is promoting.
32:12
Speaker 1: Jenna, this has been such a great conversation and it's
32:15
Speaker 1: going to be first of many, and I want to
32:17
Speaker 1: have it back on around eighty eight time around events
32:22
Speaker 1: that Above and Beyond with You maybe throwing in twenty
32:25
Speaker 1: twenty five.
32:26
Speaker 2: Absolutely, And I think we also need to encourage our
32:29
Speaker 2: allies to step up and speak up. And I think
32:32
Speaker 2: a lot of times in disability history, we make such great,
32:39
Speaker 2: great ground in you know, in accessibility and inclusion and belonging.
32:44
Speaker 2: But then we as leaders, you know, end up with
32:47
Speaker 2: the medical thing, or we need to take some time off,
32:50
Speaker 2: or you know, whatever that looks like, and then the
32:52
Speaker 2: work stops. And that's my biggest impetus for Above and
32:55
Speaker 2: Beyond with You, Like, this is not just Jenna's story, Like, yes,
32:58
Speaker 2: I'm the one who found it, I'm the one who
33:00
Speaker 2: started it. I'm the one who you know, the first
33:03
Speaker 2: story we had to use. But it's not about me.
33:07
Speaker 2: It's about this work. It's about other folks and the
33:11
Speaker 2: needs being met for everyone. And so I want to
33:15
Speaker 2: work on sustainability, I want to work on succession plans.
33:18
Speaker 2: I want to work on all the things so the
33:20
Speaker 2: work continues no matter who is the founder, no matter
33:24
Speaker 2: who's the president, no matter who's on the board, but
33:27
Speaker 2: the work continues in an authentic way with disabled people
33:30
Speaker 2: doing the work and the allies coming alongside making sure
33:34
Speaker 2: the disability voice is being moved forward.
33:37
Speaker 1: And of course I can't let the combination go without
33:39
Speaker 1: asking you this. How can people find out more about
33:42
Speaker 1: Above and Beyond with you? Is there a website social
33:44
Speaker 1: media tell us where we can find you guys.
33:47
Speaker 2: Yeah, Above and Beyond with you dot org and you
33:50
Speaker 2: can find us on social media Facebook, LinkedIn and Instagram
33:55
Speaker 2: under Above and Beyond.
33:56
Speaker 1: With you, Jenna Utenberg. Thanks for joining, and of course
33:59
Speaker 1: thanks to podmat for connecting us. And once again there's
34:02
Speaker 1: been one leg up with founder of Above and Beyond
34:06
Speaker 1: with you, Jenna Utenberg,