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Mobilize Waco treasurer Donna Dill, a bank vice president living with spina bifida, appeared on the inaugural episode of Living It, on January 19, 2024. You can listen to the episode on KWBU’s website, and enjoy the transcript, produced by Mobilize Waco vice president and secretary Suzette May, here.

INTRODUCTION:(Music in the background) KWBU is proud to present the inaugural episode of our brand new local feature, Living It. This program features conversations with our disabled neighbors about the challenges and joys of navigating life in our community. Our host is Meg Wallace, director and organizer of Mobilize Waco, a disability justice coalition working toward full participation and leadership by people with disabilities in the Greater Waco area. 
Meg’s first guest in this new series is Donna Dill. Donna is a local bank vice president. She was born with spina bifida and was the 1967 National Poster Child for the March of Dimes. 
MEG:Welcome, Donna.
MEG:So, I think that our listeners, for the most part, won’t know much about what spina bifida is so if we could start there and you can tell us a little bit about growing up with spina bifida. 
DONNA:Sure, Spina Bifida is a neural tube defect and it happens in utero. They call it, like, I think they call it an angel syndrome because every case can be different. It just depends on where the defect is in the spine as to what level of effect it has. Mine is pretty low. It’s in my lumbar so for years I walked with braces and crutches and then just when I…really, when I turned about 40, I started using a wheelchair more so now that’s mostly how I get around is with a wheelchair.
MEG:You’ve told me some fun stories about how your dad challenged you to stay on your feet as much as possible. 
DONNA:Right, right. Well, my parents were really young when I was born and my mom was 19 and my dad was 21 and they were in college and actually when I was born that they…the doctor told them not to take me home.  
MEG:Wow. What did they want them to do with you?
DONNA:Well,l I was born in 1961 and back then, you know, a lot of children with physical disabilities or institutionalized you know and I… I’m glad that my parents were so young and naive because you know they were like this is our ..this is our child I was the first child and I was their first child in the first grandchild on both sides so I was supremely spoiled but, you know, they’re just, like, no, we’re this is our child and we’re taking her home and because they were because they were so young and so nice and they were new parents they really they had no expectations they didn’t they didn’t know what they you know what they should be doing or what I should be doing or whatever so they just took me home and we just figured things out you know I say a lot of times I say my mom kept me alive but my dad put the fight in me. So when I was two I got my first pair of braces and they went all the way from my armpits all the way down…
MEG: Oh wow. 
DONNA: …and we spent time in Houston at…at TIRR and… 
MEG:What’s TIRR?
DONNA:The Texas Institute for Rehabilitation and something, I can’t… 
MEG:Something along those lines?
DONNA:Yeah, but so… In fact, my mom and I were…That’s where my mom and I were when JFK was assassinated. You know everybody has that…So, we had a little apartment. We lived down there for a while. But, when we came home, my dad made a set of parallel bars out of pipe and set them up in the living room and they had like a little table at each end and he…he said you know, whatever you were playing with at the table, we’d pick it up and we’d take it down to the other end to put it on the other table and he said it would make you so mad, you know, when we would take your toy and move it but you’d turn around and, you know, hop down to the other end and, you know, play with your toy and that’s…that’s kind of… I’ve kind of had that attitude my whole life. When somebody tells me I can’t do something, I’m like, oh yeah? Watch this. When I was, like, 16 I wanted to go, I wanted to go to band camp and I wanted to go to Sam Houston ‘cause that was where my band director when to college and that’s where my parents went to college and I’m, like, that’s where I want to go to band camp.
MEG:What was your instrument?
DONNA:I played the oboe.
DONNA:So, my parents are, like, you you have to…you have to call them and tell them, you know, that you walk with crutches and, you know, you have to tell him and I was, like, I’m not going to tell him. I’m just going to show up. They’re, like, no, you have to tell him. So, I wrote the guy a letter and told him and he called me back and he said, you know, I don’t…I don’t think that this is going to work for you because we, you know, we don’t have elevators in our, you know, in our music building and da-ta-da-ta-da. But, I went, I went to Junior High in a three story building that…This is a three story building that my grandmother went to high school in. That’s how old the building was. I mean, I…I went up and down the stairs and I had…we called it the human elevator and I…and I would have a kid on this side and…a kid on my right and a kid on my left and they would basically grab me under the arms and we would just go up and down the stairs and so I’m, like, I don’t care if you don’t have an elevator, I’m going to make it work. The only thing I…The only accommodation I asked for was that if I could drive my car between the buildings. You know, the…
MEG:Oh, now how old were you at this point?
DONNA:I was 16.
MEG:Oh ok, I had you a few years younger. 
DONNA:No, no, I was 16. But…but I’ve been navigating these…
DONNA:…multi-story buildings with no elevators for a long time so when he tell me he didn’t think that I should come, boy, that just really made me mad and, you know, and, and I went and (laughs)
MEG:And did it work out?
DONNA:oh yeah, I was a…I got an outstanding camper award so (laughs) God showed him. But…I’ve kind of…I mean, my dad says that I do…I like to do things the hard way and I don’t consciously choose the hard way but, you know, when I was in college. my friends all moved…I had to live in the dorm for 2 years. That was his rule. You have to live in the dorm for 2 years. So…so my friends all moved out into an apartment and I…you know, I wanted to live with my friends and, like, I can’t believe you’re going to live in this two story apartment and I’m, like, well yeah, ‘cause that’s where my friends are.
DONNA:and so, you know, I lived in a two story apartment and so-
MEG:So, he let you break the dorm room rule?
DONNA:No, no, I had to live in the dorm for two years-
MEG:Oh, and after that-
DONNA:But after that, yeah, yeah. He had a lot of funny rules. He did a lot of things that were really irritating when I was growing up but he did them…but in retrospect, it’s, like, they really prepared me to be a problem solver, you know? 
MEG:Right, right.
DONNA:and that’s really, I mean, like, I don’t really think of myself as a disabled. I think of myself as, well, (laughs) like this morning-
MEG:OK, yeah, tell us about this morning.
DONNA:So, this morning, there’s, there’s, like, what? three or four steps or…to get into the building-
MEG:Yeah, so do you mind if I describe it a little bit?
DONNA:Sure, sure.
MEG:OK so, so here at the kwbu studios there is a lift but it’s not often used. And last time you came, they were ready. 
MEG:And it was no problem.
MEG:This time…
DONNA:(laughs)  There’s…apparently, there’s a key and no one could find the key so the lift was not working so…so we called to try to see if somebody could find the key or whatever and we’re sitting out front and I…and I…you know, I really don’t think of myself as a disabled so I’m sitting out there waiting for somebody to try to figure out if we can turn the lift on and I’m thinking, ‘I’m just inconvenienced.’ That’s…I’m often inconvenienced but (laughs)
MEG:Right, right.
DONNA:But we….you know, figured it out. There’s another entrance. We just went around the corner. 
MEG:But even that entrance, I think Brody had to ask somebody to move a vehicle away-
MEG:So you could access that ramp-
MEG:And then that ramp was so steep-
DONNA:It’s a little steep, yeah.
MEG:Like, if I I was with you and you said is it okay if I give…you know, do you need a little push? And you said yeah that would be okay. If I had not been there, would you’ve been able to muscle up this…that ramp?
DONNA:Yeah, it would have taken me longer but I would-
DONNA:But I would have been able-
DONNA:-to do it. I have this thing on my chair called hill climbers so they keep you from rolling backwards.
MEG:Yeah. Yeah, that’s good.
DONNA:So, Yeah, a little help is good, you know, but this is…this is something that when I was…when I was learning to walk, when I was, you know, down in Houston having physical therapy and all that, even at that young age like that they teach you to ask for the kind of help that you need and my whole life I’ve been, you know, I’ve been telling people don’t help me. You know, like, especially when I…when I walked with on my crutches and my braces, people always want to help you and, you know, it’s, like, don’t touch me because I know how to do this. I’ve been doing it my whole life and if you touch me while I’m trying to do this, you’re going to throw me off. You know, so I…so I have a lot of experience in telling people, “Please don’t help me.” 
MEG:And it’s not just out of, kind of, pride.
MEG:It’s out of safety. 
DONNA:Yes, and, and people don’t really understand that, you know-
DONNA:but if I’m in…I’m in control of what I’m doing and how I’m doing it, I’m going to be safer than if you’re in control of what I’m doing and how I’m doing it. 
MEG:I actually got to see an example of that-
DONNA:(laughs) Yeah. 
MEG:-last Saturday and you have no tip…what do they call that so you don’t tip backwards?
DONNA:Oh just-
MEG:Hill climbers?
DONNA:-just no tippers.
MEG:No tippers.
DONNA:Anti-tipper bars. Yeah.
MEG:Ok. So your chair can’t easily tip backward but it can tip forward.
MEG:Yes, and so- 
DONNA:Well, inertia. Inertia…inertia and gravity are two things that I have to be very cognizant of.
MEG:And for the less scientifically around us, the inertia is a moving object keeps moving at the same pace if nothing holds it back.
MEG:Okay. So, we have been invited as Mobilize Waco to be on the Stakeholders Committee for the 25th Street Redevelopment planning and this was actually a bigger event. This wasn’t just for that committee but Waco Walks collaborated with Grassroots Community Development and the City of Waco and then there’s a planning…planning consultants to have one of the Waco Walks events to look at the 25th Street Corridor, see the businesses there, learn about it but also think about what they envision for the kind of quarter they want and the Redevelopment and so we were there because we want to make sure that it really is fully accessible and so I was there, Suzette May, who’s a member of our board, and is blind was there, and you were there because we wanted to say here are the kinds of things-
MEG:-that are working and not working for us. 
DONNA:And I think-
MEG:So this is the context for us.
DONNA:Yeah, and I think sometimes when people are just out walking, like if, if we hadn’t been there, it’s not…when you see it, it makes more of an impact on you so they…so they might think about “Oh, this would be hard for someone who’s visually impaired or someone who’s in a wheelchair” or whatever but they actually see it…they actually see the the obstacles that we’re having to work around, you know,-
DONNA:We had to go out into the street because the sidewalks were not navigable and it was on the way back so I was starting to get a little bit tired, and so one of the…one of the other participants, they’re like, “I’m going to give you a push” and I’m, like, “Okay, I’ll take a push” and I don’t know if she was nervous because we were in the street or whatever but she decided we’re going to go fast and I’m, like, “Oh, let’s…let’s not go fast” (laughs) and we go fast and everything is great until we hit a chink in the street and the wheelchair stops moving but my body has inertia and it keeps going so I’m no longer sitting in my wheelchair, I am sitting on the pavement.
MEG:So here is a situation, if we can unpack it a little bit. You had made clear that you didn’t want anybody to push you without asking first.
MEG:And there was someone who was accompanying you and watching for places where you might need a little bit of a push and he kinda had the rhythm, I feel like.
DONNA:Yeah, He…he…well, I was still pushing my arms so he was just kinda giving like a little extra just to keep things going.might need a little bit of a person giving like a little extra you know just keep things going, like-
DONNA:We’re going uphil, I’m going to-
DONNA:I’m going to help keep you moving, you know.
MEG:And norm…I mean, if things are set up properly, you should be able to do this without an assist.
MEG:Right but given the bad drain and everything- 
MEG:So…so then someone else…yeah, she…I think she was nervous about us being in the street-
DONNA:Yeah, I think so-
MEG:Also, we were falling behind a little bit, so-
MEG:So she was pushing more quickly than normal.
MEG:So then,  I just…one minute, you are in your chair and the next minute, you were in the street and the impact…it had multiple impacts, I think. One, obviously-
MEG:You had an impact with the pavement.
DONNA:(Laughs) Yeah.
MEG:(Laughs) and it had to hurt but how…what did it feel like?
DONNA:Well, it’s always kind of scary because…because of my paralysis, I don’t have sensation so-
DONNA:You know, that…they’re like, “Well, are you hurt? Are you hurt?” and I’m like,”I don’t know. We’ll find out.” Well, you know, if…we’ll just-
MEG:That’s true.
DONNA:We’ll just have to wait and see, you know.
MEG:So, like if you had skinned yourself, you wouldn’t know until you got home?
DONNA:Right, right- 
MEG:And could kind of take a look.
DONNA:but I don’t really worry about like a skinned knee or something like that or…you’re mostly worried, like, what if I broke a bone?
MEG:Right, and you wouldn’t-
DONNA:And I wouldn’t know- 
DONNA:Until something started to swell or-
MEG:Right, right. 
DONNA:So…but that was fine. I mean, I thought I was fine, you know, when it happened.
MEG:As far as the impact too, is other people got to see this is why accessibility is so important.
MEG:And this is why being careful with your offers of help and making sure that you know how to go about helping when you-
DONNA:Well…yeah, well, and my wheelchair does not have push handles on it. 
DONNA:And that is a decision that I made when I ordered it. I did not want Push handles on it because when you go…just when you go to Walmart or whatever, it’s crazy! People will come up behind you and just start pushing you. 
DONNA:Now, if you are…if you are shopping in Walmart, do people just come up and just start touching you?
DONNA:No! No, and…and your wheelchair is an extension of your body and, you know, people should not touch you without your permission. 
MEG:Right, and so when this…she did do the right thing by asking you if you needed a push-
DONNA:Yes, she did. She did. She just got a little overzealous and-
DONNA:Maybe nervous because we were in the street.
MEG:Right. So what would have worked better in a situation like that?
DONNA:It was…she did ask and I…when she said “Okay, we’re going to go fast”, I should have spoken up and said, “Let’s not go fast,” you know-
MEG:Or even say, “It wouldn’t be safe for us to go fast.”
DONNA:and again that’s…that’s something that I know…I know to tell people what kind of help- 
DONNA:I…I want or need. 
MEG:so, it’s like…it’s both…both people in the situation-
MEG:Have a responsibility to communicate all about that.
MEG:Tell me about scuba diving. I am going to propose the idea that it is SUCH an “inspiration”-
MEG:That you have gone scuba diving.
DONNA:No, it’s really not and-
MEG:It’s not? 
DONNA:It’s…we went…I went on vacation, and we went…we went snorkeling and I came back and I was talking to my friends at work and I was, like, “Oh my gosh, it was so fun. I had such a great time” and then one of my friends at work she read this thing in the paper that they were…that there was a guy in town and he was…he was looking for people that wanted to learn to scuba dive, like, people with disabilities and…and so I didn’t even see it. She saw it and she’s like, “Here,  you…you would probably like this” and so I called the guy and he’s like, “Yeah, yeah”, and so I went and met him and I met, you know, there was like two instructors and I met them. And we started talking and they’re like,” Oh yeah, yeah.” and he said “Well, you know, can you swim?” and I’m like, “Oh yeah, I can swim.” I mean, my mom…we were laughing…we were laughing about it at my mom’s Memorial the other day that that she probably taught half the kids in town how to swim, you know, so all of us can swim. So like, “Yeah, I can swim. I’m a good swimmer.”
MEG:Part of what I want to get at is…is that, HOW “inspiring!” You can swim.
DONNA:Yeah. Yeah. that’s…I mean, that the thing is that it’s just, you know, we’re all just out there trying to live our lives and, you know, have…have a happy and fulfilling life so yeah. I mean, I can swim, I can scuba dive, you know, I’ve…there’s a lot of things that I can do that other people can’t do and then there’s a lot of things that I can’t do that other people can but that’s just the mixture of life, you know, and it’s…it’s not that inspiring. it’s just, you know, we…we all have different talents and abilities and, you know, we’re just…we’re just trying to, you know, we’re just trying to live our lives and, you know, be happy. 
MEG:Right. So, I…I just…I know that that idea of being an inspiration just gets under your skin and I wanted to give you a chance to talk about that.
DONNA:Yeah, Yeah. When you go to the grocery store, you know, and people go “Oh, you’re doing such a great job”, I’m like, “So are you!” what, you know,-
MEG:Yeah, I’m buying food, you’re buying food.
DONNA:Aren’t we awesome? We’re all buying food.
MEG:(Laughs) Isn’t it amazing?
DONNA:(Laughs) Yeah. 
MEG:Tell me about your house.
DONNA:Oh my gosh. So, it was…it was a beautiful October day and I was at the fair with my little neighbor who was showing her sheep and I got a call from the alarm company and they said, “Your house is on fire” and I’m like,”No, my house isn’t on fire” and I called and nobody answered the phone. I’m like, my house might be on fire. So yeah, my house was on fire.
MEG:Oh my gosh.
DONNA:and…and Brian called me and he’s-
MEG:Brian is your husband?
DONNA:Yeah. He called me and he goes “I’m okay don’t drive fast”
MEG:Oh no.
DONNA:and so I get in the car. I can’t even get to the house. I get halfway down the block and there’s, like, three fire trucks there and, you know, a house can burn down really quickly.
DONNA:Like in 20 minutes.
MEG:But you got to rebuild it with everything you wanted so-
DONNA:Yeah, so-
MEG:Tell me your favorite couple of features since you got to redesign it exactly as you wanted it.
DONNA:Oh yeah, It’s great. I mean, the hallways are wide and bathrooms are nice and the kitchen is good.  My favorite thing is our hallway on the back of the house is really wide and it’s got windows that look out on the patio and everything but I have a sewing closet. So, you open it up and the desk pulls out and my sewing machine is there and then when I’m done,  I just close it back up and no one can see the mess. 
MEG:(Laughs) Yeah, that would nice for a lot of us.
DONNA:Yeah, but- 
MEG:and you have a lot of things that are voice activated and all that.
DONNA:Yeah, we do. We love Alexa. She turns on most of our lights and all that and we have automatic door openers so you press a little button and the doors open themselves and…
MEG:So you were able to design all that exactly…perfectly…
DONNA:Yeah,one of my good friends is a contractor and he came over and we sat down with graph paper and we just drew it out on the graph paper how we wanted it.
DONNA:And so it’s real…it’s…it’s super customized and so
DONNA:That’s the thing is you have to…you can’t rely on the builder to know what you need. Okay, now they’ll tell you…like, they might tell you they know what ADA is and all that kind of stuff but if the…I mean, this is your house.  You are allowed to have it the way you want it so if ADA says that you have to have your light switches at this level and that doesn’t work for you? You tell your builder, that’s not where I want my light switches.
MEG:Un-huh because you know what level you’re…you’re at-
MEG:and it’s not…it’s not all uniform.
DONNA:Yeah. So, like, one of the little small things in our house that you might think about it is like the electrical plugs.
DONNA:Like, they’re normally like 12 inches off the floor or whatever. 
DONNA:Ours are higher. 
DONNA:Ours are like 18 inches.
DONNA:So, when I need to plug something in, I don’t have to lean way over.
DONNA;You know, like, it’s…it’s easier for me to reach.
MEG:And so you said that you…It wasn’t so much trying to find a specialized builder. It was finding a builder who will work with you, for you to explain what you need.
MEG:and you said that you kind of went through a day in the life. What- 
DONNA:I thought about this a lot.
DONNA:I just thought about what an average day looks like. What…okay, what…what’s the first thing we do and, you know, just what can I do that will make it easier to live in this house. Like, we don’t have any tile anywhere in our house because tile has grout and grout is hard to clean. So, you know, it’s just those kind of things. You know, I…I want to make this house easy to maintain, easy to live in, and easy to maintain.
DONNA:You know. 
MEG:Right, and so you…you just kind of went through a day in the life,
MEG:And then you found a builder that was really willing to be a collaborator with you in achieving what you needed to achieve so you and Brian could navigate the house-
MEG:Really well.
MEG:Sometimes people have an acquired disability and they have their old house and what are you going to do?
MEG:What are one or two things that you could do in your house to make it accessible for a wheelchair, that’s reasonably affordable-
MEG:And who do you recommend to do it?
DONNA:Well, the house that…the house that burned down was-
DONNA:Built like in 1959.
DONNA:and so, we had a…we had a ramp that was in the garage 
DONNA:and so, we had a ramp in the garage and we had a ramp that went out to the patio and so those were the…those were the first things that we had to do.
DONNA:You know, was to get ramps so we could get in and out of the house. 
MEG:And there is a group called Texas ramp…the Texas ramp project. You can Google it if you…you have to fit within their income guidelines but you can have a ramp built, yeah. 
DONNA:yeah, so that’s the number one thing is…is the ramp that’s got the proper slope so that it’s-
DONNA:Not too hard to get up and down and a lot of times, the bathroom is the main thing. 
DONNA:The bathroom doors, for whatever reason, bathrooms doors are narrower than regular doors.
DONNA:And so,
DONNA:I don’t…I know, I know. So, those would be like the two main things that you would probably face in an older home is that you have to get the bathroom doors wide and then you’d have to get ramps.
MEG:Do you want to give a shout out to your contractor? 
DONNA:Well, the…the Larson’s are who built my house, I mean, and we actually had a hard time finding somebody that wanted to build our house because it’s not a great big mansion and it’s, you know-
MEG:Right, right. 
DONNA:and the economic…the economics of…of building affordable housing are-
MEG:It’s hare. Yeah, yeah but the company was the Larson’s?
DONNA:Um-hmm. Yep.
MEG:And they did a beautiful job.
DONNA:They did. They did. We…we just, we…they were a friend of my brothers and so it was…it was is a really good thing. I think they did it as much of a labor of love as they did an economic-
MEG:Yeah, yeah but the result for you guys has been great.
DONNA:Oh yeah, we love our house. It’s…it’s…we really like it. It’s everything we wanted.
MEG:Well, Donna, thank you so much and I’m so grateful for your service on our board and the amazing contributions you’re making to Waco through Mobilize Waco.
DONNA:Well, I…I’ve…I’m so happy that I met you, Meg. Every person that you have introduced me to has just been a really cool person that had a lot of interesting stories to tell and just…just a great network of friends. 
DONNA:I’m glad to add to my group.
MEG:It’s kind of…It’s a great group of go-getters.
DONNA:Yes. Yes.
MEG:Thank you for living it with Mobilize Waco. We’ll see you again next month on the third Friday at 11:30. 
CLOSING:This has been Living It, a production of KWBU and Mobilize Waco. Listen to this episode again on our website at kwbu.org (Music)