This week, Kimberly expresses her frustrations at the voting process, and later talks to parent activist Lindsay Brillhart about parenting with a Disability and advocating for a child who also has a disability.

The nonprofit group Lindsay mentions, TASP, can be found at Achancetoparent.net

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Send comments and questions to [email protected]

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcription

Kimberly Parsley 00:03 Welcome to Demand and Disrupt: The Disability Podcast. Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Advocato Press, based in Louisville, Kentucky. Kimberly Parsley Welcome to Demand and Disrupt: The Disability Podcast. I am Kimberly Parsley and I am here with Lisa McKinley. Hey, Lisa! How are you doing? Lisa McKinley 00:26 Hey, everybody! How is it going, Kimberly? Kimberly Parsley 00:30 It's going. Like, it's just sort of going. I was gonna say it's going good, but it's really not. Lisa McKinley 00:38 Well, that happens. I know it's been one of those weeks. Kimberly Parsley 00:42 It seems like it has. It seems like it has for lots of people, not just me. We’re recording this on election week here in Kentucky. We have off-year elections. No spoilers here – we re-elected governor Andy Beshear. I went to vote nearby, just down the road. Lisa McKinley 01:06 How was that? Kimberly Parsley 01:10 I'm trying to think of how it was that won’t make me have to have an explicit warning on this podcast episode. It was not good, Lisa. It was not great! Not great. Used to love where we used to vote. Before the pandemic, we’d go down to the fire station in our neighborhood or our community and they knew me. They would have the electronic voting machine ready to go; it would be up and running at the fire station. So, the kids would get to play on the fire truck while Michael and I voted. It was nice. It was great! That has no longer been my experience since 2020. This week, I go in to vote. Now, these were not volunteers working in the poll, okay (because I'm very respectful of volunteer coworkers), but these were not volunteers. They were actual employees of I don't even know what, but something. When I finally asked someone said she was an employee of the DMV. I was like, “Well, that explains why you don't know how to deal with blind people, I guess!” Lisa McKinley 02:21 So, people who should know; who should have their act together. Kimberly Parsley 02:25 Well, there should be training. There should be training and I will complain to the proper authorities. If anyone knows who I can complain to, please let me know. So, here's what happened. I go in and they're like, “Do you have your ID?” “Yes.” Michael shows them an ID, Michael and I together, and she says, “Does she have an ID?” I say, “Yes, she does.” So, I hand her my ID. So, Michael signs the thing and she says, “Can she sign her name?” Then, I start waving and I'm like, “Hey, look! Yes, she can! She's good, thanks!” So, I sign my name and then they hand me a paper ballot and give me a pen. I'm like, “No. There should be an electronic ballot or a machine that I can use for that.” And she says, “Oh. Well, if you want to do that, then we have to go through the process of spoiling this ballot or he could just (he being Michael, I guess) he could just help you.” So, I am like, “No. It's my right to vote independently and I want to exercise that right.“ She audibly sighs, “Okay.” I'm like, “Gee! Sorry I put you out, lady who's supposedly getting paid to be here!” So, then we go over to the electronic voting machine and it wasn’t even plugged in. No one knows how to work it, except… wait for it… my husband! He turns on the machine. Yeah! He turns on the machine and everything. Then, the woman says, “Okay, there you go.” I was like, “There should be headphones. This should be talking, that's sort of the point.” She sighs again. She goes looking all around, “Where's the headphones? Where's the headphones?” Now, keep in mind I've already been here over half an hour. There wasn’t a line, but I've already been here over half an hour, right. They find the headphones but they can't find where it place in at. So, Michael, again (thank God for my husband – I do love him dearly) finds the headphone port. He's like, “I think it's here, where this picture of a headphone jack is. I think this panel has to come up.” She was like, “Okay.” She does nothing else, though, so Michael’s like, “Okay, I'm taking it off!” So, he takes it off and he gets it and we plug it in and I use the machine and I vote. It’s so stupid, because now it has to print out a paper ballot. So, now I go to scan the ballot and it says, “Ballot cannot scan, because this is a provisional ballot.” The woman says, “Why did you cast a provisional ballot?” I'm like, “You set it up!” [frustrated laughter] So, to the poll lady who’s acting put out, the others were like, “You must have hit something when you turned it on or something, because it's a provisional ballot.” “Well, I guess we're gonna have to spoil this one!” she says in a particular tone. So, this is a second spoiled ballot. Lisa McKinley Was she annoyed? Kimberly Parsley Oh, yes! It’s all my fault! How dare a blind person come in and try to exercise my right as a citizen to vote! This was just really putting a cramp in her bag; she was not impressed. Not impressed with me being there at all. And Michael and I are sitting there waiting for them to spoil the second ballot and looking at all the different things and all the different ways no one who's disabled can vote in this place. Like, in order to get in, we saw them helping an elderly gentleman in a walker up the step to get into the place. Really? That’s not cool. Not cool! There is a ramp into the building, but that's not where they set up the voting machines. They're not trying to be helpful for people with disabilities at all. Then, I hear them telling someone, “You got to make sure you don't get out of the lines when you're filling that in; you can't get out of that line.” So, I'm like, “What about someone who has Parkinson's and has tremors or other disabilities where manual dexterity is challenging?” That's not cool! God help them if they've got to go to the electronic voting machine! So, what I ended up doing was just saying, “Okay, forget it! Michael will fill out my ballot!” Lisa McKinley But, that's never gonna do. Right? Kimberly Parsley No, that's not what I want to do and that's not cool. And what pisses me off the most about this? I, when I was 19 years old, the ADA had just passed and there was a whole, can I say shitstorm? Lisa McKinley 07:32 [laughter] I was going to say, “Ladies and gentlemen, this is Kimberly trying to decide whether or not to bite her tongue!” Kimberly Parsley 07:38 [laughter] Yes! That's what this is. There was a whole shitstorm in the small town where I lived about having to move polling places away from where they'd always been into the schools because of ADA, “So all these disabled people could have their ramps and get in to vote and how dare they mess up our politicking and all our fun and our traditions!” More than 30 years on, I'm still fighting this fight. When I was 19, I wrote a letter to the editor of the paper, I went to Frankfort to talk to the Legislative Research Committee. Yet 30 years on, this still! Lisa McKinley 08:19 I'm kind of torn in the sense that it should not be this way. Right? But at the same time, I realize that we as disabled people are not top-of-mind awareness to whoever is setting these things up. But then maybe we should be, but how do we do that and should we have already arrived there? Kimberly Parsley 08:48 I would love to have just been an afterthought, but I don't think I was thought of at all. I mean, it's annoying to me that everywhere you go in the course of your day, you're always reminded, “The world isn't really set up for you. We'd really rather you not inconvenience us with your presence.” And I am totally fed up with it! So, I needed to take a couple of days to figure out how to channel this rage into something that can maybe bring about change and not just raise my blood pressure. [aggravated laughter] Lisa McKinley 09:33 Well, I'm sorry that happened! That sucks! There’s no better word. Yet, we deal with that stuff all the time. Example: when they asked Michael, “Can she sign this?” Kimberly Parsley Oh, yes. Lisa McKinley “Can she do that?” I was just somewhere the other day and the lady I usually walk with wasn’t there. So, another lady goes up to my husband and says, “So-and-so is not here today, so I'm going to walk with her if that's okay.” Duhhh! You can address me!“ And I've said that before. I used to be really snarky about it when I was younger. Kimberly Parsley 10:29 When you had the energy for it? Lisa McKinley 10:33 Yes! I’d be at a restaurant for instance and someone would ask, “What would she like to drink?” to somebody who was with me and I would answer, “SHE would like a Sprite!” You know. Kimberly Parsley 10:39 Yes. It gets so old! One of the things I think is particularly dangerous about this kind of thing (maybe dangerous is too harsh a word): the more that people try to erase you the more you feel erased. And that's not cool! That's not cool for us. That's not cool for our kids! That's not cool for… I mean, people with disabilities are the largest minority; we keep hearing that. So, it’s not just a few of us; there's a lot of us and we can't risk being erased! We've got to stand together and make sure that we're seen and that we're heard. Possibly loudly and with expletives (but maybe that's just me)! Lisa McKinley 11:34 Yes. I'm starting to embrace this “respect me” attitude, because I've always been the type of person to just get along. “I want to make myself small and not inconvenience anyone.” But, you know what? In 2023, I am gonna take my space… Kimberly Parsley There you go! Awesome. I love it! Lisa McKinley I am here! You're gonna see me, you're gonna listen to me! If that inconveniences you, so be it. Kimberly Parsley 12:07 Yes! I love it! I love it! That makes me happy to hear you say that. It really does. It makes me happy! Speaking of being heard, I'm going to stop ranting now. Well, I mean, I will still rant, of course. I'll just not do it on this particular episode anymore or this subject. But speaking of being heard, Lisa, how do you listen to podcasts? Lisa McKinley 12:29 Well, I do not subscribe to podcasts which I what I hear is what most people do. They find a podcast they really like and then they subscribe so that they are aware when new podcasts come out. But I basically ask my Alexa device to play the podcast that I'm interested in. I will say, “Play the latest episode of Dateline” and I can do the same thing with the iPhone. I can ask Siri, “Play the latest episode of Demand and Disrupt” and she will start playing it for me. If I want to find a new podcast that I… The thing with subscribing, I guess – correct me if I'm wrong – you can kind of browse and see what kind of podcasts there are that you might be interested in. Right? Kimberly Parsley 13:28 You can with a podcast app, like on your phone. I assume on the computer, too, although that's not how I do it. I mentioned to one of my friends that I was going to be recording for the podcast and she was like, “I need to listen to your podcast. How do I do that?” I was like, “Oh, okay. You have a podcast app on your phone.” And she says, “I don't think I do.” [laughter] I'm pretty sure you do! I'm pretty sure you do. So, I thought, “It'd be good to just walk people through. Maybe unawareness of podcast apps is a common thing.” Maybe some people would like the way that you do it. That would be cool when I'm moving around the house to be able to listen to a podcast that way. That's not usually how I do it. So, certainly the Echo devices and I assume it's the same way with Google Assistant. What are the others? I assume it works pretty much the same way. The way I do it is I use a podcast app. The one I use is called Downcast. It's very blind-person friendly, it’s very voiceover friendly on the iPhone and I think they have an Android app, also, but I'm not totally certain about that. But that's the one I use. There are some others. There's one called Overcast. There's one called Castro. There are lots of podcast apps. Whatever phone you have, if you just search for podcasts, it'll tell you. I mean, all phones come loaded with an app. Then, once you're in that app you would say, “Search for Demand and Disrupt” and it would come up. Then, once you click on Demand and Disrupt, there's usually (I think visually) a symbol or icon. I'm told it's represented as like a plus sign for add. Usually up in the right hand corner, I think, or it'll say, “Subscribe” or “Follow” or such. Follow one of those and then you'll just tap on that or double tap, then you're subscribed. Then, you’ll just go to your podcast app and go up to the top usually and you can tap on something and it'll refresh your feed. You'll get the newest episodes in there. That’s how I do it. And now I'm going to try the Echo device way. Lisa McKinley 15:55 It is convenient. You can also ask her (Alexa) for podcast recommendations. Now, in the last week or so I've noticed it’s started giving me updates. I'll get this little “Do-Do” sound tone on the Alexa, which means there's a notification. It will say, “A new episode of Demand and Disrupt has posted. Would you like to listen?” Kimberly Parsley 16:29 Really? Wow, that's cool! What if you say no? Will it just hold it for later? Can you just get it later? Lisa McKinley 16:34 I have said no, because I wasn't where I could listen at the moment. I don't really know what it did with it, but at least I know it's available. It's there; you go and ask to hear it later. Kimberly Parsley 16:47 Well, that is cool! So, we hope that people have found this useful; this walkthrough of how to subscribe to podcasts and different ways to listen to podcasts. If you use a different app that we haven't mentioned and you want us to mention it, I mentioned it or you listen to podcasts in a totally different way, let us know. Send us an email at [email protected]. We would love to hear from you! Speaking of hearing from people, we are going to hear my interview with Lindsey Brillhart. She is one of the parents featured in the book, A Celebration of Family: Stories of Parents with Disabilities. I was privileged to get to talk to her. So, here’s my interview with Lindsay. So, where here today with Lindsey Brillhart. Hello, Lindsay! Welcome to Demand and Disrupt: The Disability Podcast! Lindsay Brillhart Hi, Kimberly! Kimberly Parsley How Are You Doing? Lindsay Brillhart 17:48 I am awesome! I’m glad to do this. Kimberly Parsley 17:55 Excellent! I'm so glad to hear it. Now, you live where? Tell us where you are from, again? Lindsay Brillhart 18:02 I live near Cincinnati, Ohio. Kimberly Parsley 18:04 Okay. Are you on the Ohio side or the Kentucky side? Lindsay Brillhart On the Ohio side. Kimberly Parsley 18:11 Okay. All right. Well, will you go ahead and tell us about yourself and about your disability, Lindsay? Lindsay Brillhart 18:17 Okay. I have a partner that I've had for 14 years and I have a almost 13 daughter and a 22 year old daughter – two girls. Julie is 22 and Sarah is almost 13. I talk more about Sarah. Sarah has a more significant disability, so it’s more about her, but I love to include my other daughter in everything as well. I have Asperger's Syndrome. Kimberly Parsley 18:55 Okay. Tell me about some of the supports that you need for daily activities due to the Asperger's Syndrome. Lindsay Brillhart 19:04 A lot of the supports I need are to just have reminders and keep organized. I have a calendar and everything else, but still some days (we all have them) I need reminders about things. For example, my people that come and help me out, they remind me to make sure that I have everything together for the next day for my family. They make sure I get healthy meals. When my daughter, Sarah, was younger, I didn't have the best of healthy meals and I have healthy meals now. So, I can make sure that my Sarah has everything that she needs, because she is autistic, nonverbal and she has cerebral palsy and she doesn’t speak. But we have a PECS communication system, which basically means we have a book of things that she likes and she can show me a picture. For example, there's a picture of mashed potatoes and it says, “Mashed Potatoes” on the bottom. She likes mashed potatoes, so she can hand me the picture to say, “Mom, I want mashed potatoes,” in that type of way. She does make noises and things and we're learning with her videos. She loves to watch cartoons and stuff like that, but they’re smart cartoons. For example, one of the cartoons asks, “Do you know this letter?” and my Sarah makes a particular noise, “Ummm.” It's something close to that. So, we’re like, “Good! You know what that letter is!” She knows her letters. She's in seventh grade. So, she's learning a lot through the videos and things that she watches. Kimberly Parsley 21:10 I see. What other things have you had to do to adapt to Sarah? Lindsay Brillhart 21:15 I've had to learn how to parent her. When you parent a daughter that is autistic nonverbal, you don't know how to parent them at first. With my Julie, my Julie is totally verbal and can be on her own. She lives with my mom, because my family went through some rough times. We're doing better now, but we went through some rough times and Julie decided to stay at my mom's house. She has a bedroom at my house, but she prefers to stay with my mom. But I get to see her a lot. Example: yesterday. We went to lunch yesterday before I took Julie to work. I drove her, but she took me to lunch. And other things like that. So, we do get to go out. But I get a lot of the extra supports for doing things with Sarah, because I have never been with a child that is nonverbal. So, I get some extra supports with her. Kimberly Parsley 22:17 Well, that’s great! So, tell me about Sarah. Does she go to public school? Is she in a different program? Lindsay Brillhart 22:24 Sarah goes to a special school. In the beginning, Sarah went to a public school that had an autistic program and they had different things. I've learned recently that Sarah is a level four. Basically, it means that Sarah's in school with about 30 kids that have different kinds of special needs. It’s all special needs and they're integrated in different ways for those kids. Kimberly Parsley 23:01 I see. Okay. And she's doing well there and thriving? Lindsay Brillhart 23:05 She is doing well and thriving. Kimberly Parsley 23:08 Excellent! I'm glad to hear it. Now, you are featured in the book, A Celebration of Family: Stories of Parents with Disabilities. One of the things you talk about is when you were pregnant with Julie, your first child, you were afraid she would be taken away from you. Do you want to talk a little about that? Lindsay Brillhart 23:32 Yes. I have a dad and a grandfather who were in the medical community and they thought that I couldn't parent Julie. So, what I did before I had her: they wanted me to go through a parenting course of a pretend, fake baby – a doll – for about a week or two weeks. When I got this pretend baby, I got diapers, I got bottles, I got everything to take care of this baby and I had to learn to take care of her. It was all recorded, everything I did well with her, everything I did well with that baby and I did very, very well. So, I got to prove to my family that it was something good for me. Kimberly Parsley 24:25 And the reason you were worried about that is because there was a law on the books in Ohio that the state could take children away from parents with disabilities. Right? Lindsay Brillhart 24:41 Absolutely. And they have worked [on changing the law] since that and that was, oh my goodness, a while ago – almost 20 years ago! They're working on making it better. Dr. Kara Ayers (she’s in the book as well) has done a lot of work. I haven’t done as much work with that, but I've done a lot of other work. The work that I do now to do with that is to talk to people that are going into the system – talk to professionals that are coming into the system – to learn about people that have disabilities, because a lot of the people, when they come into the professions, when it comes to this system, they don't know what it's like to work with somebody with a disability. So, I do and I've trained probably about 2000 people in the past few years just to get them learning about people with disabilities: that we are real and we are out here. And the successful stories? Yes, we've seen some not successful stories, but I like to let them know that we have some successful stores out here. Kimberly Parsley 25:57 I read in the book where you mentioned a group called Partners in Policymaking. Is that correct? Tell me about that group. Lindsay Brillhart 26:05 Yes. When we came, I got involved with that through the county. I got involved with that, because I wanted things to be done better. Right before I had my little girl, there was a case (it’s all in my story) about a little boy named Marcus Faisal who actually lived in Ohio. He had family in Kentucky. He had autism and he went for a long weekend with his foster family. He had family, but he was adopted into the system and he had a foster family. Well, long story, sad story: the little boy got burned in the fire. The foster family left him in the closet for a weekend (it’s how he got burned in the fire). They didn't want them (the authorities) finding his remains and things like that. So, they’ve made it harder for people with disabilities. It makes me sad, because I don't want anything like that to happen to anybody. I think that people with disabilities should be out there and be known/to be known. We all have struggles, nobody's perfect in this world. I just want people to know that, “Hey, there are people out here that have kids with disabilities, but they have extra help and they can do things better for their families.” Kimberly Parsley 27:35 Yes! That was a truly, truly tragic, horrific story! Tell me about your work with TASP. Lindsay Brillhart 27:48 TASP stands for The Association for Successful Parenting. The website is attached to parent.org. I have worked with them for, oh my goodness, since right before my Sarah was born. I got involved with them, because of Partners and Policy, actually. Because of Partners and Policy, I had a lady that lived in Columbus, which is about two hours from me, say, “Do you want to go to this conference with me?” So, I went with the lady. I met her in the area where she was and I went with her to this conference. [As a result] I have been involved with this organization for 15 years as a part of my life. So, we help make sure that families get their stories known, because a lot of the families don't get their stories known and we want families to be out there and living successfully. Kimberly Parsley 28:58 Okay. What can people with disabilities do to advocate for themselves? Or what can people do to advocate for their children with disabilities? What are some things that people can do? Lindsay Brillhart 29:10 Let me give you some examples of a few things I've done. Telling my story in the book. I think that helps get disability awareness out there. Talking to people. Not just people in the book, I talk to people weekly about my story with my Sarah just to make sure that things are getting taken care of. For example, we're still working on my said medical doctors about things they don’t understand. With Sarah, some of her medical doctors are fellows, which are basically people going into medicine from college to be doctors and things like that. I still have issues, because they don’t understand people with disabilities. So, advocate, advocate, advocate for your kids! That's one big thing. We're working on making it better for them. Kimberly Parsley 30:02 Yeah. Do you find the medical system challenging to navigate? Lindsay Brillhart 30:09 Yes! Even when I have a dad and I have a grandfather [who were in medicine]. My dad is retired and my grandfather's not living anymore, but I still have family nurses and stuff like that. Even with that, yes, absolutely! I have learned to talk to them and just tell them about Sarah and make sure that my Sarah comes first, make sure that person comes first always. Kimberly Parsley 30:36 Did you get better at that over time? Was that hard for you to do in the beginning? Lindsay Brillhart 30:40 There are sometimes I have struggled with it [nervous laughter]. But yes, I'm always getting better at doing that. Kimberly Parsley 30:47 So, would that be your advice to other people? Just start and it'll get easier and better over time? Lindsay Brillhart 30:53 Yes. And your stories can always change. They are not gonna stay the same. They will get better every time you tell your story. I have people that I have told my story to 20,000 times, maybe (a lot of times) and they learn different things about me every single time that I present with them. Kimberly Parsley 31:16 Great! Well, thank you for sharing your experience with us, Lindsay. I’ll link to the organizations you mentioned in the show notes. I appreciate you joining us today! 31:27 I appreciate you interviewing me. I hope everybody has a good day! Kimberly Parsley 31:31 Thank you! If you like the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love it if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts. That helps more people to find us. If you really, really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all. Every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to [email protected] and put “transcript” in the subject line. Thanks to Steve Moore for helping us out with transcripts. Thanks to Chris Onkin for our theme music. Demand and Disrupt is a publication of the Advocato Press with generous support from the Center for Accessible Living located in Louisville, Kentucky. You can find links to buy the book A Celebration of Family: Stories of Parents with Disabilities in our show notes. Thanks, everyone!

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