Speaker 1 00:00:04 Kristen new cat is a globally recognized disability rights advocate, former world class athlete, and a political appointee in the Obama administration. She's a five-time American Paralympic record holder three time junior national record holder, and the former captain of the U S Paralympic swim team for the 2010 Greek open in 2014. Kristen was named the global mentor for disability inclusion initiatives under the Clinton global initiative at the university. In her analysis of the United nations disability policies have been archived in the academic council for the UN system from December, 2015 to March, 2017. Kristen was the confidential assistant to the chief of staff for the national endowment for the arts under the Obama administration from December, 2017 to July, 2019. Kristen was appointed by DC mayor Bowzer as the chair to the city's first multimodal accessibility advisory council. She's been featured in Forbes and a shared innovative perspectives at the UN the world bank.
Speaker 1 00:01:07 The Parsons school of design and has been interviewed on stage by former first daughter, Chelsea Clinton, Kristen holds a BA in human rights from Trinity college and a graduate certificate in nonprofit management from Harvard. The Clinton foundation listed Kristin as one of 12 people who will inspire you to make a difference along with Supreme justice, Ruth Bader Ginsburg, Kristin curly lives and works for the federal government in Washington, DC, Kristen and I both had the same form of muscular dystrophy FSHD, and she also is here to share her personal journey as well. It's an honor to have Kristen here today. I hope you enjoy her story.
Speaker 0 00:01:47 Welcome to FreeWheel with carton, this podcast, cheers stories of people with various disabilities and shines a new light on accessibility topics. Our goal is to knock down barriers so we can roll through life a little easier and build a community to do this together. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions. We welcome you on your journey towards inclusion for all. And now your host Carden, Waikato global disability advocates and wheelchair warrior.
Speaker 1 00:02:22 Welcome back to another episode of free, willing with carton. I have Kristen Dukette on joining me virtually. Hey Kristen, how's it going? Hi, I'm doing well. How about yourself? I'm well, I'm well, just, you know, making it through COVID one day at a time, like we all are figuring it out. Um, well I'm excited to have you on the podcast to just talk about muscular dystrophy. So you, you and I have the same type of muscular dystrophy and then also just your advocacy work and what the ADA means to you because it is 30th anniversary. And just talk a little about, about your Paralympic trials. So we have a lot to talk about because you're an incredible person.
Speaker 2 00:03:07 No, thank you so much. And I really thought that it was important to come on and speak and, and chat with you on, on your podcast because it's pretty rare to come across someone with the same condition and, you know, just sharing that commonality I think is really important and being open to.
Speaker 1 00:03:29 Yeah, definitely. And so, yeah, just having that commonality and being able to talk about it, I know you and I are of similar age. And so I remember you were one of those first people that I met that was of the same age and I could see how you're progressing and kind of like what my life would be like. Cause I think you're just a few years older than me and, um, but also see all their great work and kind of be like, okay, well it is possible to be an advocate. So talk to me a little bit about you, your progression and kind of where that started.
Speaker 2 00:04:09 Yeah, absolutely. So I grew up, well, when I was younger, when I was a kid, I didn't show any symptoms I was running around and uh, just like any other non-disabled kid, I was doing about six different sports at the time, which surround like six, seven. I wanted to be an Olympic swimmer when I grow up and around seven eight or so my mom always had a feeling there was something off and she would kept bringing me to different doctors and all the different doctors are like, yeah, she's fine. You know, and she's just developing, it's fine. And there were different times when I was on a pool deck doing some team or gymnastics and just different memories I have of all of a sudden, like I couldn't, I couldn't stand on the volt. And the coach is yelling at me to like, you know, stop landing on your knees, like stand on your feet.
Speaker 2 00:05:17 And I just remember being seven, eight years old, like telling like yelling at myself, like, why aren't you doing that? It's like go and do this or walking on the pool deck. And my mom telling me later, she was like, your shoulders were back. Your, you were winging in your shoulder blades. And uh, you know, different parents were like, Oh no, she's just developing. Like I, one of my kids did that. It's fine. And I, I just remember, I just slowly could not keep up. I couldn't keep up with running or if I was at practice and different, my gym teacher at the time, DNS teacher, I think a few other people too. They just started calling my mom and dad and say like, I think, I think your daughter's gate is off. I think, you know, she really needs to get looked at. And I do remember vaguely them calling the house.
Speaker 2 00:06:15 And for some reason I just thought in my, in my mind that it was, you know, they're just calling to tell my parents how great I am at this sport. Like I'm going to be that Olympic athlete when I'm older. And so I remember we won, um, I am from Connecticut, so we went to Connecticut children's hospital and I got, uh, I got genetically tested and I don't remember the exact test that this is called, but I'm sure you do. It's sent needle ones that they like pull out the electricity in two different muscles to see if the muscle responds or if it's the nerve itself. That's the issue. I forget that test. But I remember doing it at nine years old. I remember they had to like an electro
Speaker 3 00:07:07 Kind of thing. I think I know what you're talking about. They use in physical therapy.
Speaker 2 00:07:10 No, it's, uh, it's a test and I forget the exact name off the top of my head, but I've had it done a few times and they essentially take, it's almost like a needle and they put it into different parts of your body that they want to test. And so they're testing, they'll, they'll put a bit of electricity into it. I think it's electricity. And to see if the muscle retracts to find out if it's a muscle that's having the issue or if it's the nerve that's having the issue. And I remember having that died and they put it into my knee cap and I remember it was the most awful thing I experienced at the time, but I remember, you know, right after that, I got my very first CD, which was Brittany Spears. Her first hit me baby. One more time I'm home, which is awesome.
Speaker 3 00:08:02 And I got like a Brom player
Speaker 2 00:08:05 Headphones, and I really didn't understand what was going on, but I was like, wow, I just went through that. But I got this Brittany Stu your CD. And it was the week of my ninth birthday was when I was, when we found out the diagnosis, which again, I was nine. So I had no clue what that meant. I would still consider like myself at that time, more of a invisible disability. It wasn't really visible at that point. And so I remember just being in my classroom in fourth, fifth grade, just like, wow, like this, this is my secret. So if I like my friend enough, like I'll tell them and just, you know, going and getting a little bit older, being on preteen and fifth and sixth grade, I started to limp walking. I quit all sports then too. I just, I am so type a and very ambitious backed and stubborn that I, I was just like, look like I'm wanting to be an Olympic swimmer.
Speaker 2 00:09:15 I wanted to do all this stuff and I can't keep up with my friends. So what's the point. So I just quit. And obviously I'm not sure about you, but I know that different doctors said still be active, but don't be like intensely active. And so I just took up the violent, I still want it to be good at something. I always wrote contracts to my parents every semester or quarter that the school year started. Like if I get straight A's, I'll get XYZ. So I just, I don't know where this like contract thing came up, but I had them sign it. We dated it, we put it out in the fridge. And so if I got straight A's, which I usually did, I don't know when I did hit during those sides, but I serve myself it's academics and music. And so what I'm trying to say, preteens so was awful.
Speaker 2 00:10:08 I remember I, when I started to limp and fall and I just uncontrollably would keep falling and I would just be tired a lot. And I was quite frankly compressed that like 11, 12, 13, the nurse had to come into my class at the time in fifth grade and tell my class the condition that I had and to stop making fun of me. And I wasn't doing this to get more attention. And I just remember, I couldn't be in the room because I was so embarrassed and so ashamed that I was not like anyone else that I grew up with. I grew up, um, in a very homogeneous white, suburban area in Connecticut, which is it's fine, but I was definitely the only disabled person, obviously at that time too. It's not like there was much inclusion or acceptance on a grand level of disability in that sense.
Speaker 2 00:11:13 So I grew up with a lens of doing the best they could if there was going to be a treatment, but seeing my condition as more of a, uh, uh, my disability has more of a medical problem and not as, uh, a social identity and acceptance, which I think I came to that when I was in college. But, um, I'm trying to think, uh, I got, I got back into swimming. I retaught myself at a swim when I was 15. I started to Mo yeah, I started to, before that do different holistic physical therapies, homeopathic therapy. And they were helpful when I was like 14. I started to go gluten free sugar, free dairy free. I was really helpful to take down the anti-inflammatories and just make my body as healthy as it could. I think I started to use a wheelchair for a long distance in the eighth grade for anyone on this, uh, field trip for a fair of in Massachusetts.
Speaker 2 00:12:27 And again, I know for me, just the social and psychological impact growing up with a degenerative condition, I think is more impactful than the actual physical portion of it. So definitely was working through that. And then when I was in high school, I started to use a Walker and I hated it at the time when I first did, even though I knew it was helpful, but I just wanted to be like everyone else. I just want to fit in. I just want to know Blendon I just, I didn't want to stand out. I hated it. I do remember, I wouldn't say Catholic high school. So all the majority of the girls were the standard uniform skirt. And I just thought I was so pretty, but my legs were not straight. My legs were more than knock kneed and I was so ashamed on how my legs locked and how they operated.
Speaker 2 00:13:30 Uh, when I walked and I, I walked in, I had these medical shoes, they were called, they are called Z coils. There's like a coil at the end of every heel or the heel of the shoe. And it helps us solve, um, shock absorption and helps like with your pack and stuff. So by that time I had severe lower, lower doses. I was still walking again. So stubborn, no have been telling me. No, I do remember there were times when I think it was my parents, maybe some close, loved ones being like, you know, you would be less tired if you used a wheelchair for like to go from class to class. And I just didn't want to do it. I remember crying myself to sleep. Like I just, I don't want to be that mature different. I can't do it. And so I retaught myself how to swing when I was 15, 16, and just, just to be on my high school swim team, because I was so sick of being a manager of a tennis team just didn't have managers as sports teams that I I'm okay with math.
Speaker 2 00:14:41 It's fine, but I, I'm not a fan of like going out of my way to do it. And I'm more of a team. Like I want to be on field. I want to do it. I want to be that athlete. So I thought to myself, you know, like I'm using a Walker, I'm doing this, but I just want to be with my friends and 85% of my school at the time it's sports. You know, it was a private Catholic high school in Connecticut. So I wanted to be like my friends and I, uh, again with these contracts, I wrote a contract. If I get straight A's mom and dad, can you get my dad? Can you get me into a membership to the valleys gym down the street from my high school. So I can just relearn how to swim. And it was a very small pole.
Speaker 2 00:15:38 It was maybe about 10, 10 to 11 yards ish. And I just slowly retaught myself. I just went and I picked swimming because I didn't want to use some device or adaptive device or technology. I wanted to just use my own body and see what I could really do. And I just remember, like, that was something that I love to do when I was kid and I had a dream, but maybe that dream was to just help me get to feeling accepted in, in a community and back with my friends. So that's what I did. I set a goal and I just threw myself into that goal of, I have no clue where I got this number, but I was like, I want to swim 600 laps in one day a year from now. So I can tell if this high school coach, like, I am not going to make any points to your team. I'm not going to be fast enough, but, uh, showing my endurance, I hope this shows how much I love this for and what I can bring to the team. And I just want to be with my friends. And, uh, that's what I did. Again, I have no clue where I got the number 600 from, I think it was far of like, that sounds like a big number. Like let's do it.
Speaker 2 00:16:59 I did, I, it was just so calming to, you know, I was by myself in this small hall. I thought it was awesome of what I was doing. Getting back into, getting an endorphin rush from not doing it for six years and not being active. I just started to feel more positive and hopeful again. And I think obviously that's a biological thing too, but I would dream. I would, you know, create these scenarios in my head when I was swimming and counting lease and it mattered and Pierce, they just wanted to keep going and going. And if there was this a senior citizen or some sort of, you know, other person swimming next to me, I would pretend I was like, the final countdown feel like this is the end all be all. And I be like, see you, you be that, you know, older person.
Speaker 2 00:18:05 And they had no clue that, you know, they were racing you. Um, but creating those scenarios like high stakes and like, okay, this is, you're still healing. Michael thoughts right now in the Olympic. Like, what is that going to be like, not even knowing what was to come. I just was doing that because it was fun and my imagination and I missed it. And so when I did reach that, I reached out to the high school swim coach in an email and she emailed me back. It was my sister's junior from at the time, because I remember when she emailed me back. So many people were out our house for pictures and I've printed off the email. I highlighted different portions of it. I was like, this is amazing. And so essentially what she said was, um, I don't know you, but you sound incredible.
Speaker 2 00:19:04 Of course you can be on our team as long as you train for the Paralympics and are for 2012, a lot of great disabled swimmers have come from Connecticut. And I think that you have what it takes to do that. And again, I was like, what is, what is the Paralympics like? What is disabled sports? You know, even going back to when I was 13, I remember watching the 2004 Olympic games and swimming, and I just woke up one night and this is when I was no longer competing for anything. And I was done for us. I really didn't know what, what was the point of my life? Because I wasn't doing things that I loved and I didn't feel included either. I didn't feel accepted, right. A lot of assets in my life. So I remember waking up and looking at all these ribbons of all competition stuff.
Speaker 2 00:20:01 And I was like, my God, I wish if I could have one more shot, I would love to give it my all. And why don't, you know, six years later, I swam at that exciting pole that I watched when I was 13 years old. And I just keep reflecting that hall fully. Uh, I am hopeful that we can have that visibility now. So there's younger kids and girls and boys, and even older adults that become nearly newly disabled. They see themselves represented in all facets of life. I think that would have changed the course for a lot of things, not just for, but I think for a lot of people, even though our stories are unique and interesting, and I do believe that we fulfill our own purpose in time, but I do reflect on that moment quite a lot sometimes as to, no, this is why representation matters.
Speaker 2 00:21:05 So, yeah, so I was on the team. I started to get into disabled sports. My first disabled Swami was in 2007 in college park, Maryland in December. And I remember it so vividly because I just, it was one of the first times I felt like I belonged somewhere without even saying a word. Yeah. Um, and I was still walking at that time, but it was very cautiously. And I started to use, uh, a chair and a scooter full time. Well, not full time just yet, but almost full time when I started college in 2009, because there was just no way I was going to know and it'll be getting my freshman year. I would use the scooter to go from building to building, but then I would get out of my scooter and my Walker was attached to the back. So then I could walk in each building, but then I just, I it's, I started to get too much anxiety as to when the class ended, when I was going to get up and go. And I just realized it was just a lot easier to just stay in my chair and transfer slide from my chair to the desk or things like that
Speaker 1 00:22:30 Safer that way too.
Speaker 2 00:22:31 Oh yeah. That's painful. Yeah. Right.
Speaker 1 00:22:36 I mean, you and I can really probably just like standing up from a chair. I mean, for me, it was at least seven or eight years ago when I can do that. But I always remember just, I just don't want people to look at the way that I get up because, because of the lower doses, just like the way you have to like lean on things. And it's like, I just feel like I look ugly doing that. Totally. These thoughts they're intrusive. And they come into your mind and it's, I don't want people to look at me. I'm ugly. This is not beautiful. This is not what a woman looks like. This is not what an abled body or a non-disabled body looks like. And I just want to be normal. Yeah,
Speaker 2 00:23:21 No, absolutely. And I'm sure you can relate to this a little too. There, there were so many times where growing up, I just would have people not only stare it did. And I think swimming helped for sure. Like when I broke records or things like that, like that helps with my body and my confidence and being comfortable in a swimsuit and doing all these things with my body that no one else is doing on a pool deck that helped a lot. However, growing up, I would get so many times what's wrong with you. What's what's wrong. And obviously what's wrong all the time. And obviously, you know, those are very well intentioned, but when you chronically get that, that you start to believe that to a certain extent that there is something wrong. So yeah, I totally get it. And also the staring, I think at this point, if people do still stare and I notice, I just say hi or stare right back, which makes them equally uncomfortable. So then now we're at some sort of similar playing field that like, okay, you're staring back. Yeah. I see you. Right. So, yeah,
Speaker 1 00:24:42 What's interesting is when I was walking, obviously
Speaker 2 00:24:47 Had a very big
Speaker 1 00:24:48 Gait lordosis, like looked like I'm probably was going to fall every time I took a step, but you know, I had a certain point of gravity center of gravity that I had created for myself.
Speaker 2 00:25:02 Yeah.
Speaker 1 00:25:03 And I feel like I got more stairs walking than I did using a wheelchair. And to this day, now that I'm using a wheelchair, but I would say, which is interesting because I think people are fearful more of a gate or something that looks unsteady on ends. It's like kind of wobbly versus a wheelchair or scooter, which she kind of just like make a glance and then keep going. Yeah. Yeah. But I think now I get a lot of, well, you look healthy and normal and I'm like, well,
Speaker 2 00:25:43 Okay. Yeah.
Speaker 1 00:25:45 I mean, for the most part. Yeah.
Speaker 2 00:25:49 And I think the other thing too, which I think goes into havoc hissy also is probably the biggest transition that I had to do was about five years ago when it just was too unsafe to walk and stand on my own and especially being independent and wanting that independence that I made the decision to no longer student walk anymore. And I think that that, that was really hard, but I also knew that being in a chair helps my mobility and my access to the world. And then also I came to the conclusion that my value in contributions to the world and my purpose and who I am as a person is not dictated by whether I walk or not, or if I'm in a device or not because of what I bring to the table. And I think that that is probably the biggest issue that I have with mainstream media.
Speaker 2 00:27:06 When we see stories of they no longer walk or, Oh my gosh, look at them. They're, they're walking across the, they're walking down the aisle to their wedding or they're walking to get their diploma. I think again, that's like a very personal thing and I, I respect people's decisions and reasons to do that. But my opinion is I find how those stories are depicted very harmful for people that are disabled to a non-disabled and equal, valued eye, that your value does not increase for all the sudden being able to do something it will body to get in, because that is very harmful. Uh, that is so harmful, right? Yeah. Yeah. I will say just the media in general portrays what a disability should look like or how we should view a disability. And one thing that really stuck out to me is when you were talking about the skirts in private school, and you had the same idea in your mind of what a beautiful girl looked like in that skirt, in that uniform and for you, you didn't feel like you fit into that mold.
Speaker 2 00:28:34 Did you ever feel like you ever did fit into that mold at that time? No, I don't think I did. Um, I wore pants, my choice, the other option. So there were kind of baggy pants. So you, I, I felt like I could hide my, my legs and how not straight. They were probably by senior year, I did wear a skirt, but even at that point, I didn't feel, you know, fall, I guess in that sense also because I was a senior in high school and I didn't drive like my friends. So I wasn't in like the senior parking lots or things like that. I was still waiting for my parents to pick me, you know, dad, I'm trying to think now. Um, I think, I think I started to feel more beautiful. The more I got into the water because it felt so much more like home.
Speaker 2 00:29:49 I do remember going to my senior prom. I did not go to junior prom. I asked a boy that I thought was a good friend to just come as my friend. And he said, yes. And then two weeks later he said, he forgot that. He said yes to someone out. And I felt awful. And so I was like, I'm not going. I did go my senior year. I would probably say, I did feel good to that extent I had, I was like showing my shoulders. And so I was really self conscious about my shoulders, but I liked that I was in the dress in that dress, but I think I felt most beautiful in a home when I was always in the water. And then in the water,
Speaker 1 00:30:49 We're in the Paralympic trials and you were training for that. Tell me a little bit more about the journey of that. And he went from swimming 600 laps in a single day to then your journey to being on team USA and keep going on.
Speaker 2 00:31:06 Yeah, I mean, with our so much, there's so much to say I'll try and keep it high level as possible, but I was on the college swim team for freshman year. I went two weeks in college at the time. And I talked with the coach leading into it of, you know, obviously again, it was division three, but I wasn't going to be adding any points and this is what I'm doing XYZ. And they were at the time and they seemed really supportive. And on board I was 19. So I went during my freshman year to Bogota, Colombia, we all got almost all of us on team USA. We got the flow, which is awful. I remember being sick in bed in Bogota, Colombia, like 3000 feet above sea level. It was like high altitude. And I was watching legally blind in my bed and like, Hey, legally blind.
Speaker 2 00:32:16 So legally blind hits home. Like I feel very comforted now, always watching. Um, it was, it was an experience I don't really recommend. I don't have any interests going back to Columbia, like 11 years later, but that's fine. Going into, I started getting really fast my freshman year. I think it was because I was on the college team, but to talk about inclusion and acceptance, uh, my, the, the college coach, even though I wasn't improving, I was getting faster and I was on team USA. And then I just got asked to be on another team for team USA to go to Greece.
Speaker 1 00:33:06 He wrote me an email
Speaker 2 00:33:09 A few weeks before my sophomore year stating all the reasons why I should no longer be on the Cleveland Swan team and that they were doing tryouts and that it all related back to my disability. It wasn't a bunch of bullet points saying like, uh, you know, you ask for extra help to get out of the pool. And it, it all related to that. And again, I felt shame and I felt like a burden. And so I, uh,
Speaker 1 00:33:39 Or something that you loved so much and felt like at home. Yeah.
Speaker 2 00:33:43 Yeah. So I come, I filed a complaint with the department of education. I didn't want to Sue the school. I just wanted to train you. And I just wanted to be somewhere that I felt where I belonged to in a academic sense. I, I had that community with different disabled athletes, but you only come across that. You only see them, you know, maybe five to six times a year, you still have to train and live your life. So I transferred very quickly to Trinity college and I trained privately and I commuted my first year at Trinity. So my sophomore year, and then I lived on campus, my junior and senior year of college. And at those times I was training and going to about four different holes at times, being in a pole at 5:00 AM, uh, at Wesleyan, which isn't too far from Trinity college in Connecticut.
Speaker 2 00:34:46 And then I would, you know, my mom would drive me back to campus and I would go to class and I would just be tired by 10 o'clock that I would be like lights out by 10, 11 o'clock and I strained. And it was awesome in the sense that I broke records. My dorm room was filled with motivational posted notes. Uh, I was part of a really cool, interesting documentary called endless abilities about, uh, different disabled athletes at different levels and training throughout the country. But I did, I was really injured. I, um, right after I did a half Ironman open ocean swim out in San, which is about a mile 1.2 miles, and it was freezing. And it was, I thought I was halfway died in reality. I was not like at all anywhere close. Um, I, uh, tore or I pulled a nerve in my neck going into my right arm in a lot of doctors thought that it was a progression that I over-trained, that I overdid a muscle because training with FSH, uh, if you injure yourself, you're most likely not going to get that back.
Speaker 2 00:36:14 And I do, uh, there is that fine line of pushing yourself to a certain woman and then you need to recover and, and really taking that into practice because there to train smartly, there really is no, go harder, go home. It's actually, how are you training most effective for your body? And I had to. Yeah. So I had to, um, we have for 11 months, I fortunately did break a few more records. I had the class I got in the Paralympic league. You get classified into a certain class system based off of your mobility. And so with the injury, with my right arm, almost all of it came back, but my strength wasn't there. So I got moved down a class and I did make it to trials. And I was at trials. I knew I had a feeling. I just wasn't going to make it.
Speaker 2 00:37:18 I, I felt like I put way too much pressure on myself, but also I threw everything I had into something that I really wanted it to work. And it was a childhood dream of mine. And in my mind it made sense for it to happen because I wanted it so badly. And I worked towards it so badly. I had to be top 10 in the world to be considered, to make the London team and for the 50 free, which is not my event at all. I'm a backstroker. I think I was like 13 at the time when I was crushing, I've never felt something so badly. I wanted go and slip right through my fingers. But at the same time I learned so much of what I thought was failure. What I thought I couldn't indoor because leading into that, I, I thought I had just this very precise plan of like, if I didn't make London, I was gonna train for world championships. I was going to do X, Y, Z I'll I'll still keep going vote, blah. And I just all along with just being depressed, that, that did not go that way for me. I also felt a profound sense of freedom that I didn't have to wake up at 5:00 AM. I didn't have to do all this stuff. And so
Speaker 4 00:38:44 I took their benefits, right. I took a year off.
Speaker 2 00:38:47 I was like, let me just enjoy my senior year in college, also swim. I slowly retired from my world, my world class classification. So I didn't renew it. And there were times where I would just cry. I don't pull deck and just get it out. And then I wouldn't go swim because my, my body still needed it. And that's the thing. Um, so I guess one of the most, best things I could ever do for my body, but so I knew it benefited high potty, even though I really didn't want to do it. And I still kept going because I knew it was so helpful and just a sense of freedom. But, um, yeah, I, I basically my senior year in college just like dove into what felt like college of, okay, I can hang out with friends like me. I definitely was not a part ear at all.
Speaker 2 00:39:52 Um, but it was good to socialize and I really just absorbed what I studied. I majored in human rights from my undergrad and my honors senior thesis was whether I took the UN convention on the rights of persons with disabilities. And there is an article within that convention of article 13.5 to the right to sport. And so my advisor at the time was like, you could easily tie this on an international and a national and a personal level. And so that's what I did. And, um, that's how I started to get involved with, uh, interviewing different advocates and people that actually helped write that convention. Just very, it was incredible. And then at that same time was all when I was like, okay, I'm learning about human rights. How do I actually want to implement this once I graduate college? Because there's only so much I could do was knowing about human rights and obviously of liberal arts.
Speaker 2 00:40:57 You know, I know how to read and write and really research, how am I actually gonna use that? And, um, I took a internship at the Connecticut state legislature for the Senate majority leader at the time I thought that public service and politics may be a way to implement human rights. I wasn't sure if it was cynical or not. So I was like, let me try it out. I don't know. And I'm a people person. So, um, I love talking to people and I, I really care about others and what we're doing for this and our society. So that's kind of where it slowly started to transition from, from intense sport to how can I actually contribute? And I think another thing that I was really pondering was okay, Kristen, that's great that you could be really fast in the water and say that you've got a bunch of metals, but what are you actually doing to contribute to other people in this world? Because there will be a time that I'm no longer here. And I don't want to say like, well, Kristen was just really fast in the water. And I think that there's so much more multi-dimensional aspects to myself and in yourself and all advice that I really wanted to not like leave something behind, but I wanted to keep contributing to ideologies and systems that would be most useful to push this world and the society forward.
Speaker 1 00:42:43 Yeah,
Speaker 2 00:42:45 That was great. And
Speaker 1 00:42:48 It's so important that we're leaving our Mark. And I think having a disability really allows you to see the gaps in the representation and inclusion and, you know, whatever it may be. And just listening to your whole story, it seems like at every year you're faced with some type of roadblock that people put on you. They say, no, you're not strong enough. No, you're you need help getting into the pool. No, your legs don't look pretty in a right. In a skirt. And it just like continues every day. There's a new roadblock and a challenge. And I feel like people disabilities rise to a higher level of all right, put it on me, keep coming, because guess what? This is only fuel to the fire. And that's what you're doing is you started doing all these internships and with human rights. And I think it's just really awesome to see what you're doing to make a change.
Speaker 1 00:43:55 Is there anything that you can speak to? Yeah, you're welcome. And it takes people like you to continue to just knock at the door because looking at the American disabilities act, and this is our 30th year anniversary, but yet we have so far to come and still far to go. So yeah, it takes people, I guess, to just continue to chip away at the iceberg every day of, okay, well, I don't feel included here. I don't feel represented here. What can we do to change that? So that when we are the people that come behind us, don't have to feel those feelings of isolation and depression and anxiety because this world wasn't built for them and people haven't been educated and trained to include that.
Speaker 2 00:44:50 Yeah, it's so true. I think on a broader level and through a sociological and social justice lens, I keep reminding cute and reminiscing and, and well, not reminiscing cause I didn't live through it, but keep looking and reflecting back on the civil rights movement and how there's so many other minority populations that feel this way. And for very valid reasons, like if we think about the voting rights act by no means, does that mean that people that are African American or of different colors actually have full rights to vote in our country and so much gerrymandering and,
Speaker 1 00:45:40 And drawing that limit them.
Speaker 2 00:45:42 Right. And you know, I can see that too with a lot of like with LGBTQ issues just because it's finally legal to get married does not mean that it's fully inclusive and acceptable for people of different sexualities. And so that's where I connect that to a lot of people that still are curious and interested in wanting to learn and understand about disability in that sense, that just because that we have the ADA does not mean at all that this world is this, uh, American society is still perfect. I think that the ADA is the foundation of what could be and what can be, but the ADA also, and this goes to a lot of laws just to generally just because there's a law doesn't mean that culturally it's changed and is accepted and also necessarily forced. So I think that that's where a lot of issues or a lot of improvement can come from.
Speaker 2 00:46:53 And I also think too, going back to the civil rights movement, I keep thinking back to people's faith and their spirituality that rise above what is their reality at the moment to what could be because they have so much faith in a higher power or a higher consciousness that can bring us society forward, that they know that it's not going to happen in their lifetime, but that doesn't mean that it won't happen, period. And I think that that's also thing that I also talk about with, you know, some of my friends too, that about the me too movement or women and abuse and violence is, is there is still so much more that we can do for women in equal pay and having more women in high profile positions because you're qualified at all. These things are not going to happen tomorrow, but we are all agents of change that we can help push that forward for when it will happen, but that it's not going to be immediate.
Speaker 2 00:48:10 And I don't expect that actual true change. Sustainable change is going to immediately occur within the next 24 hours. I am a firm believer that sustainable change happens over time, that you have to work with systems, that things that are already in place, and we have to reach out to people and meet them where they are, which can be quite difficult at times too. So where on a personal and professional level, where can I use empathy? How can I be best of emotional intelligence? So I always check in with myself, be like, okay, I need to take a step back. This is too much. I need to take a rest. How do I fuel up to continue moving forward?
Speaker 1 00:49:03 Hmm Hmm. That's important to make sure that you're also taking care of yourself before you go and help others. Yeah. Because you're not at your full potential, if you aren't taking care of yourself and thinking about just the Americans with disabilities act. And I like how you said, sure. We have a law in place which sets up what can be, what the future could be, but you know, why do we still roll around and face inequities? Why, why are there elevators that are broken or missing? Why are there buildings that are still an accessible? Why are there children who can't get accessible technology to thrive in grade school? You know? So it's just, it continues over and over these obstacles. But I do think things like what we're facing right now, this whole racial injustice movement, it's like another civils rights, 2.0, and we're living in it.
Speaker 1 00:50:02 And it's really awesome to see that because I really do believe that people's mindsets are shifting, they're waking up and they're realizing I was at a conference last week. And so many businesses kind of had this awakening of, wow. I didn't even think about my marketing content. I didn't even think about inclusive hiring. I didn't even think about equal pay and all these other avenues that can be, and then starting to think about, okay, what about all the other minority groups that are available? You know, how can we be a more inclusive company and world? And so it starts those incremental changes and you're right. It is, it takes time to make these changes, to get people to change. And when we bring on new generations, they then adapt to that. Norm of it is normal to treat people who are LGBTQ or who are black or indigenous or people of color, whatever it is or disabled that, Oh, that's just, there's just a person. Right. Do you know that may look a little different, smell, a little different walk, a little different role, a little different, it doesn't matter. Just we're human at the end of the day. And human rights is so important. We are when people, we deserve that. Right. And especially in America. Right. Absolutely. So, yeah, I think it's just really awesome to talk to you about this. Where do you see the, or where do you see where the future will be and what do you think we still need to do?
Speaker 2 00:51:36 Um, I think honestly there's a time. Yeah. I mean, I think there, I mean, there's our discussions on this, but I think it, if it's not already a slow reality, I think it will become a reality of the discussion about human rights in biotech and like biotechnology with STEM cells and whether it's with CRISPR or not. And using that to, you know, not only assist with different conditions that people are open to wanting that, but using that to create like a more able body person. And then also I think the disability rights community, we're very wary of essentially eradicating a lot of disabled people through that technology and also hardening the already disabled stereotypes that are really harmful. And so I think with the advancement of technology, in that sense, there's going to be a hurdle. I hope my hope in other areas. So when it comes to voting and campaigns and database systems, that disability is seen as a demographic, whether that's on Fox or MSNBC or NBC of, well, you know, over 25 to 85 black, white, and then we have disabled, right?
Speaker 2 00:53:18 Like having that on there and seeing the civility as a social identity and more these facets, I think social media is helping out for sure. And really giving knowledge and firsthand experiences to people very, very easily accessible. So I think that will push it forward. I think always just the general thing when it comes to laws and policies is how is that being enforced? And we, we do have a lot of offices and systems that enforce the NDA and you can report things, but I always think that that can be improved, but there is a part of me, that's it? I hope we live in a world where this is very idealistic, right discrimination. And that sense is not as high of always having to report things. And that it's just given. It's just there because that's just how it should be. That universal design is period.
Speaker 2 00:54:35 Um, I hope that the Paralympics and Paralympic athletes are more represented in our mainstream media. I hope we see that too with disabled models. And I hope we continue to see more of the disability community, more reflected just in all facets of life that you do not need to be cured to show your value in that being disabled is a very human thing. So I hope we can continue to move towards that ideology. Although I am a bit weary of, uh, medical technology in terms of disability rights in communities. I don't, I think everyone should always just have autonomy over their body. So hopefully an autonomy and choice over their body and what they want to do. So I hope that still remains and also does not hinder all the work and more continue work that needs to get done for the disability community
Speaker 1 00:55:46 Long way to go. But I am hopeful. I feel like it will take another 30 years. Hopefully that's all it will take. Yeah. Um, because just thinking about how far we have come in 30 years and where we can go in the next 30 years, I think we can really make tremendous movements in the right direction. So Kristen, thank you so much for your time and your expertise being vulnerable and sharing everything about who you are and what your world, your ideal world should look like for people with disabilities.
Speaker 2 00:56:21 Thank you for having me. It's a pleasure.
Speaker 0 00:56:24 Thank you, friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.