Jenny Stiles and Jean Munson

Recorded September 19, 2020 Archived September 19, 2020 37:52 minutes
0:00 / 0:00
Id: mby020066

Description

Colleagues Jenny Stiles (33) and Jean Munson (32) discuss their connection, the work that they do in leadership and transforming language and conversations around disability.

Subject Log / Time Code

JS and JM discuss how they met.
JS describes her disability and her role in a leadership organization.
JS discussed disability, saying, "If you don't see disabled people next to you doing what you're doing then you don't know that they can do what you're doing too."
JS discusses disability language and privilege.
JS discusses what dialysis treatment is like.
JS and JM discuss COVID transitions.

Participants

  • Jenny Stiles
  • Jean Munson

Recording Location

Virtual Recording

Partnership Type

Outreach

Transcript

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00:00 Running has started you can begin with your intros.

00:03 This is Jean Munson. I am 32 years old. Today is Saturday September 19th, 2020 currently recording from Las Vegas, Nevada. And I am a colleague as my partner here.

00:18 Hi, I'm Jenny Stiles. I'm 33 years old. Today is Saturday, September 9th 2009 in Las Vegas, Nevada, and I am with my colleague Jean Munson.

00:30 I am really happy to be up on a Saturday morning because I love you. Even if even if this is unusual must really love Jenny to be here. So I just wanted to say how much I love you. And so, you know, we are kind of unlikely friends in a way like the X-Men right because we are chosen and where we know each other because we were both part of new leadership, Nevada women's Leadership Conference held, Nevada.

01:31 Usually go out at UNLV but includes women from all over the state where we live together in the dorms and have leaders called Spurs who helped us guide us through our through leadership and empowerment dare. I say and get panels from all kinds of women from different sectors of the world and in different types of businesses and things like that and we talked about, you know, things like mentorship, you know, being able to find your way through school specially like if you're a minority because it can get an education and actually become get into a into a leadership role and just to kind of it's very much.

02:31 About togetherness to which I think fights a lot of the stereotypes that are put on women that we're all like each other at weigh-in like in my year of new leadership. We were all like Barry like we were so tight. We were crying all the our last day we were all sobbing. Hysterically. It was ridiculous girl. Like we don't want to leave each other and it was it was a great experience and we all just I think we all got a lot from it, but we all just like like at night in the dorm. It was a little boy can type. It really was for us to enjoy the door like up until like ridiculous hours cuz we got up at ridiculous hours. We were up midnight maybe one and then we would wake up at like 5 a.m. Or earlier and it was just like why do we do that? But we did it all again. I wouldn't change a thing The Last Knight worth it. It was before this before self-care was trending like about 3 years ago. So yeah.

03:31 Really early stay up really late. And when what year were you again? Jenny? Just a fun fact about 2012 will two fun facts about 2012 or 2012 was the last year before we had no money to run that program the last class instead of kind of miraculous purse or something great programs like that and nonprofits, right? Yeah completely getting grass and things like that. That is an entire like I do. I have done non-profit now since I was 13

04:31 The last like 10 years mostly fundraising you have to be really creative and you be willing to socialize a lot a lot of gang is a lot about like actually like me down with people in like making relationship.

04:50 Yeah, and Jenny of the other fun fact is that you were our only openly the stable attendee. Can you tell us prior to that experience and Leadership? And then how was experiencing mean when your ship in both lateral? Well at the time but one let's start first. I have cried as far as multiple birth defects. We have no reasoning really for it. There's theories but you know, and then so I was born with multiple birth defects and all those things and I have been working through education with those disabilities in one way or another with difficulties, but I really love education in I really love learning. So I just go through it and I found out about your shirt. I was I would volunteer and a chair for the Women's Center.

05:50 Take back the night. I was a co-chair for that and I was very much in that mindset of like helping women that have gone through interpersonal violence, cuz I know so many people been through it and I was super passionate about it at the time and was brought up to me like hey, there's this thing and I thought I missed the deadline cuz I was reading it off the school newsletter newsletter and I like the deadline and then he was emailing Christina Hernandez and woman Center on and she goes, you know, you can still do it. They're extending applications on my quad. She's like get it in as soon as possible. And then I got I also told that this is quite extraordinary to I got for reference letters because I was so nervous.

06:45 Did you actually did because I was just sitting through the floppy do cuz I have to scan all of them because one of them I wasn't sure was going to make it so I decided to like just doubled how to make sure like they just got through in time. Cuz I know one person I asked like they definitely wants to go cuz I'm not sure if I'm going to be able to get inside. So I just like I double down and was like, yeah, I'm slightly ambitious. And so I got into it a week before new leadership. Yeah, I was told that I would go with the kidney failure cuz I've had a kidney transplant 14 years prior to that and I was in kidney failure and the transplant failed and I was very nervous about it all and I was already nervous beforehand the idea of disability and Leadership sharing this year is very unheard of and is always kind of questions and

07:45 Also the fact of a disabled person I have lived with my parents my entire life just because I have medical needs in which someone should be there around me most of the time just in case there are emergencies and I was so nervous cuz I had never like like lived away or like been inside. There's no one with any knowledge of my medical conditions and it is time for a week. At least. You didn't 2012 not right now in kobita. No buts and I remember my fiance was very like pushing me to do. I dislike. This is perfect for you to go do it you'll be fine and I luckily I have a fiance who is just incredibly like supportive in that way and that's another thing I found about like a lot of the women there. That's younger than me. I'm 33. I'm not the average college a lot of them. Like when it came to the new leadership parently a lot of their male Partners the ones I had male partner.

08:45 Very like why are you doing this? Why you even need to do that? Are you becoming some weird feminists like one of those weird, That's what you need to do this. I think we'll get a lot from it and I did but yes as far as I knew I was as far as I'm aware and I think we've checked this and you speak to a lot of the women and new leader is currently in from the past and I am the first openly gay person to be a new leadership. I disclose my disability and my chronic illness. I do not have a problem doing that. I am usually very open about it cuz I feel as an advocate that you need to be open about that if you're comfortable with it, which I very much am because if we don't see people with disability even just within our own Community not even in me.

09:45 Year was started a huge problem. But if you don't know the person sitting next to you doing the same things you're doing is disabled. You don't build that idea that disabled people can do the exact same thing. You can if not just in a different mode. So I was open about it. I think everybody knew at the time using Mobility AIDS. I use a Mobility Aid now to get around but everyone knew I my legs were swelling cuz that's part of kidney failure. You can't get rid of fluid as easily as for your kidneys do and my legs were just like they were three trunks on some days and I've been through it and I but I love what I was doing. So if you love me like, you know, if it's not actually detrimental to you and I was just uncomfortable, but I just it was very cool being and having that scope and I remember going through new leadership and having to like poke at people and go. Excuse me when you move

10:45 You mentioned different demographics. You didn't mention disability and the most jar moment was Christina Hernandez was one of the people that did it wasn't a panel, but she didn't exercise exercise about privilege where forward or depending on the statement and if we had privilege in that area or we didn't have cartilage in that area and I had to go up to her after work and go excuse me, Christina. I know you didn't mean to do this because I've known Christina for years and I know her partner and I know I love them both so much and I went I know you don't need to do this cuz also Sabrina has a disabled.

11:33 Like I know you didn't mean to do this, but you didn't mention disability as

11:39 As part of your and I'm like I'm like maybe you could change that next time or start adding. And she looked at me and she goes I didn't even realize I wasn't even if it's okay. I know it didn't come from a bad place. It was just a place of its again. You don't see it. So why are you even going to mention it out of sight out of mind? So I told you I just like I imagined it like I'm not mad. I'm not angry. I'm not even upset. I'm just saying next time. Could you and she goes off course? I did every time afterwards unlike thank you. Yes, it has. Yeah. Well, it's really great to know where that has rooted itself in because I'm currently running the program and so I do not want though. That's a moment. It's not always standing behind a Podium or what not right? It's it's having that kind of discourse and assessing intention vs. Interaction.

12:39 Expand a little bit more about how what are some simple steps that people who may be future applicants all over the country. What kind of advocacy steps are like fine until I just honestly just talkin talkin I'm speaking when it comes to disability ask about accessibility whether you know, the person is disabled because sometimes I mean, we've all met people who just don't like going upstairs or find it hard to going upstairs. They wouldn't consider themselves sick or disabled. They just may have bad knees and that doesn't make you sick or disabled. What does name means that the body wears down. I'm in my thirties and my knees were never a problem, but there are problem now, okay.

13:39 Something to make this easier for you to make this more accessible for you to make this just to make this day go easier for you. Sometimes it's not about like what you can and cannot do sometimes it's just like making the day just go a little bit easier and that's what it is like in this day of technology so much technology was built to make things more convenient and easier and quicker and that's what accessibility accessibility is. It is convenient for someone who absolutely needs it to do something we have phones that we talk to now instead of typing an email out or something that is actually an accessibility device that's accessibility software bills.

14:28 For accessibility and disability before it was created just so that you can like Google search something without having to type something.

14:37 Who sings like even being able to like speaking things come up on your word document that is accessibility the things we don't know many things like that. Lots of like our bills from accessibility Sandpoint. They're not built from came from a person going. I actually can't do this like this is not something I can we do. How do we change that? You know Innovation comes from necessity and you know,

15:11 A lot of things a lot of able-bodied people don't know come from

15:17 A person with a disability

15:19 Needing to be able to do something and some lovely engineer or scientist just came up with it. So ask about what do you need ask about am I mentioning you am I adding you to the conversation is the same as any minority. It's the same as anything that we may not see and as a point of leadership it is literally just speaking up I think leadership at the most part is just speaking up the amount of times. I've spoken up and just people been like, oh, I didn't know that it is education. I believe the most important part of nonprofit of anything is awareness cuz you do not you can't fix something that you don't know about.

16:01 Just recently. I was talking to a child about four people as weird with a weird week. It was brought up to me that my stepfather was like I was taught to not say disability in my training. I'm like, he's like, oh we were told to say alternatively abled. That's a problem. That's not something a disabled person came up with that was something that enable body person came up with so that they could avoid saying the word table cuz we think the word disable feels like dirty word and it's not

16:42 I know the majority of the community does not mind or disabled. We we don't like the word alternate superheroes. Why didn't I get super powers for my disability. Sorry to say. I love to be Wonder Woman. My things were in super hero is Miss Marvel. I'd love to embiggen. I can't but also I was saying like a super like why is this wrong? And I'm like

17:10 If you are a person of color wouldn't you like would you like to be called alternatively colored or alternatively skin? No, no one wants because the alternative You Are a Human Being not alternative. You are a person that might be slightly deviated from what we accepted the norm, but that does not make you other that just makes you unique that make that means that we are not all the mold. We're not old and that is perfectly fine.

17:41 So Mike weirdly that's what my week has been has been like talking about disability language, which I love words. I'm a writer one of my favorite things is talking about words. So I have no problem with it. Yeah, I to me, you know with everything that you said you definitely call people and you know, this was calling out and I think that takes a lot of compassion to see that okay that they can't see it within their own privileged, you know, whether they are the most activist activist like myself and so I just want to say thank you because God really is like horses me to also look at things in an ironic way or what does she looks like on the other foot and whatnot. So, yeah, we all have to look at our privilege and look what our privilege has blinded us to not even just given us that other people have had easily Haven't had as easily.

18:41 Like just what we haven't seen luckily, my mother taught me that most people aren't coming from a malicious pool. They're coming from the point of just ignore when that ignorance comes from a want. I want to be ignorant. I don't want to know this that's a problem that's malicious literally never been told. I have never come in contact with that. That's an okay ignorance that can be fixed easily that can be fixed with questions that can be fixed the great conversation. And the thing is a lot of those conversations lead to Friendship better relationship. I find it's just it's me recognizing that my privilege is blinded me because I am a white woman.

19:28 There are plenty of things. I have not seen and I've not been through please add you are enabling person. Let me educate. Let's have a good conversation. Let's see where we match up to. Let's see if both of our differences have matched up and where we can see each other at the same level. So because having unprotected with some things

19:55 Allows you to see a on the same level with other people that have not had privileges. Is there different and I think that's my favorite part of being disabled is that I can join a larger community and I can see other people and be like, okay, you're not disabled but we are all here trying to just level the playing field trying to like all so just you know, except and encouraged other stuff Frances and to me my disability has allowed me to do that and wonderful ways. So I've never seen my disability is a negative. I think it allows me to open the conversation up even further and as someone who is a writer and a journalist and I love interviewing people and getting to know them. I love opening a space for somebody to like be there in just like their truth and that's where my life is a disabled person has allowed me to like what that warrant. So

20:55 I mean, I love having those conversations. I love like single person being like so it's right connection.

21:11 So it's been a year since 2012. So can you tell us a buck jump in the time here in 20-25 dialysis?

21:31 I wish I had to go out of school. I couldn't work. I was just going through that journey. I got a transplant from a from a police officer in California a living donor who is just a marvelous human being who tells the best dad jokes. So hopefully I can I have gone back to school. I have my journalism major, which I love I'm a junior now in school and I am just adoring what I'm doing. I am working as a program assistant at UNLV volunteers which creates volunteer events, especially when 12 when there isn't covid-19.

22:31 I help come up with events. And we Spotlight Spotlight different organizations and different ways to volunteer and I just adore tile of the nonprofit sector. If for some reason I can't get a job in journalism right away. I'm perfectly happy sitting in my nonprofit sector just you know doing the good work, I think both are very available to help people and do a lot of good work. So I think they're I personally see them very similar Lisa. I love both but I love what I'm doing right now Jenny you are such a giver right? So like you or talk to you I feel the excitement from you talking about the work that you do and to know that cuz I have been part of indirectly fundraisers to get you these transfer. It's a it's a really small town in. So yeah your name would surface and I even like, you know, the start of Facebook, I would like Jenny Stiles.

23:31 I mean the years leading up to where you are. Now, you have bought in live each of those years and you have done also like Facebook updates to kind of normal eyes and visibility around the dialysis part and you know and you you went through some really like mental dialysis is something we don't see a lot of it is like if your Harry Potter fan, I like to explain it as living life like how Voldemort is told to do after he drinks the blood of the Unicorn you live a half life. That is what living on dialysis and is living on a machine. You have to The Machinist actually get your blood. Sorry for anyone out there that squeamish takes your blood out of your body through to put her in your armor chest and it circulates it to get fluid.

24:31 Because your kidneys are actually what makes your urine and allows you to pay your bladder actually just as a reservoir for it and I bet it is your kidney actually filters all the toxins in your body. Y'all think deliver. Does that deliver some of that the kidney acid does most of that and it regulates the potassium and sodium and the phosphorus in your body. So that is a very important organ even if we think it's not it is essential and it's actually your kidney that actually controls your blood pressure is not your heart. So it's very important and I was born with kidney disease and I had a transplant Pryor when I was 12 years old, it lasted 14 years thankfully and I was on dialysis for 5 and 1/2 years, which is not abnormal. The wait time right now is roughly at least my transmit was in California. It goes by state relatively or region and my wait time was 11.

25:31 12 years my dialysis if I had to go off the list. That's why I'm sure you saw I was campaigning to find a living donor. I have 25 people call in to be tested either they couldn't cuz they had a chronic illness or they decide to back out. Once I find out that they were a match. They have a lot of different therapies. They can use to give someone who isn't the right blood type to actually give that kid need to the other person. There's plenty of things you can do matching is actually at least the problem nowadays. It is the Thursday flag of kidney donors out there. We need more living Kidney donor organs are grades and we need more of those obviously definitely check that Mark on your idea get that little hard but being Living Waters what will change the game on that and right now actually drink Obed and down transplant because it's too dangerous to transom that someone who is not like near death.

26:31 So because once you get a transplant, they have to lower your immune system. So your immune system doesn't go it's not for anyone who lives with something like lupus or an autoimmune disease is very similar to that or you have to lower the immune system enough that you kind of make it Daisy and it's just ignores the organ transplant altogether. And so that's something that's unfortunately going on right now with covet is we've had to slow down and stop a lot of kidney transplants that would have gone for it otherwise, but I was lucky enough to get a kidney. I was very much at the end of my rope. I actually ended up in a chemical, right after my kidney transplant because I nearly died and then I nearly died out of the car because my pulse ox dropped from like normal like 90 something to send to 40% and it was bad. I would they had to intubate me and we all know what that is now it is because of

27:31 Bed, and I woke up later and I had to learn to walk again because of everything that muffins and also had to give me to have to give me paralytics so I had to learn to walk again and it was just a whole thing currently. I'm in about a projection. I am doing therapy and every Friday for rejection right now and one particularly once a month, which Dudley be quite tired. It makes me quite and so I'm going through that. We're very oh my gosh. He's very positive will be perfectly fine quite frankly at this point. We're not worried about losing the kidney rejection is much different than failure ejection. You can change you can stop the immune system after the kidney and still be lucky what the hell is that? You're not reanimating it. This isn't Frankenweenie.

28:26 Oh, wow. Wow, I mean I think you know, you just detailing this kind of transparency over that condition like a lot of like older folks both of us and probably don't even tell the story about the step by step process going through the younger people going through kidney failure and having high blood pressure having diabetes and those can actually make you very susceptible to kidney failure to will totally Robins your kidney. If you let it go too far. So kidney disease specially being on dialysis and being in kidney failure kills more people than breast cancer and prostate cancer together.

29:12 Stop the disease. We don't talk about we don't think it needs are important. They are it's a very deadly disease and it's something that we can do something about being a water is not difficult. You do a lot of testing. It's a lot of like blood test and then like getting ultrasounds and other kind of like X-rays and stuff like that but generally are in the hospital for 3 days. If you are accepted as a Kidney donor actually most living kidney donors live longer than people that don't just because they only picked healthy people you don't have to be a marathon runner. You don't have to be like an MBA just being normal person with good health and go and see if you can be a Kidney donor and also the testing also for a few people has actually let them know they have strange chronic illnesses or Eastern Lake warning signs. So it's been all around and my mom was my first Kidney donor and she's doing great. She ran a half-marathon literally decided a month before

30:12 Run a marathon Marathon. I'm like Mom you can't do that. She's a normal Runner but usually like like maybe three or four miles and then she just did and she got like a really great time and I had a friend at the time marathon runner. She like you should have been able to do that like no one should have been able to do that like a month training and huge is that so Jenny donation does not really affect your life usually too much. And also if you do which is very rare happened to go into kidney failure after being a Kidney donor no matter when you get put to the top of the list, which means you do not wait 9 to 11 years or 11 or 12 years as is the waitlist. Now, you just kind of like sit there for get all the testing you need to figure out what you need as far as ownership and then you just wait for a donor. So it's a process that not a lot of people know about a lot of people think it's difficult and you have two kidneys for a reason so and you and when you take one kidney or the other would literally take us to the end of the job.

31:12 Just like that. So you may not feel great for a couple of weeks, but you just don't feel great for a couple of weeks and then you're up and going and you get disability for it and you never pay a dime my insurance and my Hospital paid everything for my daughter. So I have a fabulous are so kind. Yeah bedside manner patients if they are like they do therapy. They do all kinds of things. They very much take care of you there and take care of the person. So I'm so happy. I'm so lucky. I got them. So and they take care of cramp is better. Let's just say complex. I've had 32 surgeries total. So I go under the complex banner. And so they had no problem taking

32:12 Care of me and being there and they saved my life twice. So amazing and their nonprofit hospital. So

32:24 It is so I wanted to ask, you know, everyone in 20/20 is kind of living out of routine. And this is like very new for people living in their home and never leaving.

32:44 Yeah, yeah, it would go out occasionally, but depending on how I felt and also because of my immune system can only go out and actually enjoy like what people would consider normal life every once in a while most of my life leaving the house to go to dialysis three times a week and coming back and just sleeping because the general recovery time for dialysis is 24 hours.

33:20 So this is kind of normal for me and it's funny because I'm in a long-distance relationship with my partner 12 years. And so it's like webcam like Skype all these things are very normal for us. So we were saying like we're kind of like more equipped to deal with this thing than others. Like don't get me wrong. I get Cabin Fever quite easily. I do need to get out of the house. I can't like just stay indoors, but I can take walks and we've been driving around me and my mom and my stepdad has literally just gone on car wrecks around the valley.

33:58 Going up to Mount Charleston things like that just to like get out of the four walls think that's my biggest problem is like the same four walls all the time, but I'm a crafter. I love card making I'm someone who has to have a creative Outlet or else I drive people around me crazy specifically my fiance always have to have a project, you know anymore. I have class and I'm really enjoying my classes and I work in that really like helps keep me in a good helping the space. I have a therapist with which house was that too. I was supposed to go over to England for a second time in June see my fiance cuz we fly back and forth to see each other at least once or twice a year and a bit of a downer but now I'm learning French. So the next time I go over we can go to Paris and I can like, you know use my newfound skill. However, good it is

34:58 Like my name a little bit. But yeah.

35:03 Set a time this all together. How do you think having experienced me leadership? Nevada has propelled you into this the next eight years of your life and Beyond I think if repaired in the fact of giving me the headspace of rejecting it rejecting the fact that I'm not good enough or I can't do something or just because I don't know something that I can't do it. I think I was taught there that you know, there's always going to be learning Gap and don't have gone to school stuff the biggest thing I took from it was just because you didn't get a degree in this doesn't mean you can't do that take your pill and use them wherever you go cuz skills aren't just a one-day thing you use them everywhere and I just I learned just how able I am to be a leader because you meet people from everywhere that do everything.

36:03 And you realized being a leader isn't being like, you know, the captain of the team is being the person that helps other people move forward and go forward and learn and just is a group mentality. It's not just me doing great and like and being looking great and getting like Awards and like titles is about that forward motion of everyone and you know, not leaving anyone behind and taking that person aside and going what do you need help with? What do I need to like? What do I need to sell at 8:40 and that's really stupid and everyone is capable of that. Every human being is capable of that from the youngest person to the oldest person no matter where you come from no matter your background. It's just that kind of like stepping outside your comfort zone a little bit, which is my favorite place to be I love being out and just that today. I'm just going to I'm going to take that extra stuff and I'm going to try

37:03 In like help someone forward and I'm going to help myself forward in the process.

37:10 Thank you, Jenny. Thank you for being here in China this face and sharing. Your truths. Sona is the best part of my job is even if I wasn't there when you went to the program I get to see people you like you in a sense of finding themselves by signing their advocacy. And so I'm thinking so much do I love talking as always