Latest / nondriver / How Brenda's Vision Loss Became a Reason for Self-Empowerment

Transcript

How Brenda's Vision Loss Became a Reason for Self-Empowerment · nondriver

• Brenda: I realized that without my vision loss I would not be in the position I am. Challenges are hard and you can't always see the reason for it, but but there is and if you kinda embrace that and and focus on problem solving instead of focusing on the problem itself, I think that can be life changing. Devin: Welcome to nondriver Anna: Real stories of navigating our world from people who can't drive. Devin: I'm Devin Silvernail. Anna: And I'm Anna Zivarts Devin: And today we have the pleasure of meeting with Brenda Niccum Brenda lives in Fort Wayne, Indiana. Brenda was diagnosed with retinous pigmentosa, a hereditary eye condition causing progressive vision loss. Began using paratransit about nine years ago and fully moved over to non-driver status roughly about three years ago. Brenda coordinates Information and referral services for the League of the Blind and Disabled, holds an ADA coordinator certification, leads the Fort Wayne chapter of the Foundation Fighting Blindness, and recently founded Blessed, Bold, and Blind, a faith-driven community for people navigating life challenges. Anna: Last year I was in Fort Wayne doing some work with Citilink their transit agency, and got to meet Brenda at a really great community event they held there. Do you want to tell us a little bit about yourself, maybe you know, your life when you were a driver? and and what that transition was like moving from being able to drive to relying on transit and paratransit to get around. Brenda: Thank you for having me. It's an honor to be able to speak with you guys. I I grew up not knowing that this condition was going to impact my life the way it has. I wore glasses at age two and couldn't see in the dark. And I just thought that kids who wore glasses couldn't see in the dark. So I didn't think anything about it, to be honest. The doctors watched, they saw no signs of the scarring that is telltale for retinitis pigmentosa. And so I just went about life and teenager began driving. my dad taught me how to drive probably, I don't know, twelve. We had a big a big property and we drove through the trees, navigated. Never had any issues with driving then got my license like everybody else. It wasn't until I hit my early thirties. I was coming home and dusk approached a little quicker than what I had anticipated. and nailed a curb as I was driving home and flattened my tire and kind of hit me that gosh, I didn't see that. What if somebody had been crossing that intersection? I could have, you know, really taken them out. So I began limiting the the time that I drove, not at night or if I did not the safest technique, but I drove following taillights of other cars, until I got familiar with the paratransit that works here in Fort Wayton City LinkedIn. What was the first Anna: that first paratransit ride, like like the very first time you got on a bus, was it after you knew that you were you were losing your ability to drive or did you have like earlier transit experiences? Brenda: At that point when I started, I was still driving and I had limited myself only during the day, only in certain lighting situations. And so, you know, getting set up with paratransit was great. Cine Link was great at helping us get set up. I got on the bus and I still remember Miss Tanya was my first driver. she made me feel so comfortable. we always had she was a talker too, so we had good conversations. She explained to me how things worked and so it wa it was good. It took me a little while to get used to you know, it's not a limousine, so I'm not the only stop on the way and and scheduling my time so that I allotted for the other stops along the way to still reach my destination in time. But it was a very pleasant experience. Devin: It's really interesting. We've talked to a lot of people, while recording this podcast who well, several people who have had the same kind of transition as you, you know, where they had been driving for much of their life and then they had to make that choice. And one theme that I've been noticing is that it really isn't it isn't a selfish selfish decision. It's really a a very selfless decision where you and many people that we've talked to say that they are worried about putting other people in danger. And I I find that really interesting. you know, despite I guess that selflessness though, how I mean, how easy was it to come to that conclusion? I mean, I imagine that there was some emotions that you had to tackle and and some planning that you had to do. So I'm curious how how that went for you. Brenda: I would say it was devastating at first. It feels like, you know, I'm gonna have to rely on somebody else all the time where I had been raised to be very independent. And so, I didn't know how that was going to play out. But it has been phenomenal because without utilizing the paratransit, I would have to rely on family or friends. And back then Uber and Lyft and rideshares were not so prominent. So that was the option. And even with those services available now, Paratransit is much more affordable and reliable. Anna: And the work you do now is is sort of helping people navigate that transition, right? The way that you know, so that they have the support that you you you got, or maybe more support. What's that like? Talk a little bit about your job. Brenda: The League for the Blind and Disabled is a center for independent living. So we work with people with all disabilities. we did start out as a vision focused agency. and the fun the funds that were seed funds that were originally raised were brought about by involvement with Helen Keller. So we have kind of a rich history. but So my job is kind of the first point of contact. When somebody's reaching out for the first time and not sure what they need or where to go, they get connected with me and then I gather their information and our whole goal is to promote self advocacy and independence. And so sometimes it's just a matter of giving them the resource and telling them how to access it. And then sometimes they need a little more guidance. And so it's connecting with our case coordinators to help them get those services. so we have a broad array of programs from starting at youth services all the way up to senior blind services. we do our DeafLink program provides ASL interpreters for those who are deaf and hard of hearing. But specific to transportation. we also have orientational mobility trainers that teach people who have lost their vision or, you know, have had no vision on how to successfully utilize public transportation services. and the case coordinators can help with, you know, connecting with the the provider and then guiding them through that. application process and making sure that they're successful in utilizing that. Anna: In my experience growing up in a family that didn't ride transit, there was a lot of stigma around transing riding transit. And there was also this sense of like, well, we'll just give you rides places. Like you don't need to use that. we're not gonna like and so like how do you help people? I think because it's so embedded in so many of our our lives or families, right? This like transit's not for us. You can just rely on on friends and family and like overcoming that and helping people see that. I mean while it may be nice to get rides sometimes from friends and family, it comes with a lot of strings attached. Brenda: You are always at the mercy of their schedule when it's that way. So I really do kinda try and promote that independence. You know, you can go when you want to go and it you know, it's kind of that how empowering it's been for me. the the neat thing about centers for independent living are it is a majority of the staff or people with disabilities. who have lived experience and then can share that. So you know, I will start a phone call and gather the information and then share that I have a vision impairment and I've been through this. And, you know, we do get calls from well meaning family members and and service providers, but in order to receive services through us, the consumer has to reach out on their own. So once that connection and I say, hey, look I know that this is the way you've been doing it, but here's another way that you might want to consider and here's how it's worked for me. Devin: I remember being a teenager and and having the like a local agency come and visit me at my house and and talk about the the the fact that I wouldn't be able to drive ever. And and I was so I mean it was a teenager, right? So I was just so against the idea of even listening, you know, and it I imagine it's gotta be hard, you know, finding that perfect time in that person's life. And what what can you say that can help them really Feel okay about the transition. Brenda: tell them, you know, from my perspective, it was difficult. But in the end, you know, I just feel more more empowered, more capable, more, you know, self sufficient to be able to do things on my own. And well it's great to have that time with family and friends, you know, when they're available. You know, sometimes you just want to do things on your own. Anna: So want to pivot a bit and talk about City Link and and transit in in Indiana. And you know, I think here in Seattle, we get spoiled sometimes and we, you know, critique our system and complain when, you know, the headways are 15 minutes and not, you know, six minutes. And I I remember, you know, hearing stories and and just, you know, talking to the folks at the transit agency there that are really trying to provide service to A community that has a lot of people who can't drive or can't afford to drive with really, really limited resources and you know, people talking about how bus service and this is the fixed route bus, but you know, would run one hour, once an hour one route and then the next hour a different route. So it's basically every two hours you'd have a Brenda: bus. Right. I also served on City Link's Board of Directors for a while. and that was an honor to be able to provide passenger perspective and and that kind of thing. But the thing is, you know, the transit agencies are really limited by the amount of funding that they receive. So no matter how many things they would like to be able to expand and provide more of, if the funding you know, it's been stagnant and so if it doesn't match the cost of expenses just to do what you're already doing, then it makes it difficult to be able to do more of the things that the community is is asking for and demanding. So you know, w we had quite a few of those who utilize the service go before city council to try and advocate for greater I don't want to say funding because that sounds more like an obligation. I say investment because it is. It's an investment in the community. People who have greater access to transportation are able to gain employment and buy a house and and go to school and become part of the tax base that that fuels the economy. So it's it's so important for those who utilize public transportation to use their voice and speak up with legislators so that they understand the importance of funding public transportation. we here in the office went and down to the state house and spoke with some legislators and I just happened to connect with somebody who was walking by and and told him my story and he wasn't over our district, but he said we need more people like you in front of us with your stories so that we understand the impact. Anna: That's really cool you were on the board. I didn't know that piece. Brenda: So before I ever started at the league, I did childcare for 30 years. And as my vision got worse, I realized that, you know, eight babies at my feet all the time might not be the safest environment. at, you know, almost 50 years old, I was like, what am I gonna do? I got a job at a hospital. there was some discrimination, some issues. I did not have a good foundational knowledge of the ADA at that time. so did not advocate for myself, but I did start volunteering at the league. Once I started volunteering at the league, there was an advocacy program that they were starting. and I said, Okay, yeah, I wanna do that. You know, when I when I stopped working at the hospital. I was like, God has a bigger plan, so let me figure it out. And and I was drawn to the league. And so after volunteering for about a week and a half, I said, I'm gonna work there someday. And a year and a half got later got hired in. So as part of my employment, there was an opportunity to join Leadership Fort Wayne, which is an amazing program of networking and information. And as part of that you got a board internship appointment. So I started with Goodwill, because I'd utilized those for employment services. And then an opportunity came available on City Lynx board and I said, Hey, look, I have I have some input here and it was a wonderful experience. So my schedule got to be a little overwhelming as I took over the Foundation Fighting Blindness chapter, presidency and and regret having to step down, but still stay in good communication with the leadership there and our paratransit is now subcontracted. So I'm constantly in contact with the new leadership there and I have provided training for new drivers as far as disability etiquette and again, you know, rider perspective, but just giving drivers some cues on when you're transporting people with disabilities, whether you're on paratransit or fixed route, identifying yourself or letting, you know, someone who's blind or low vision know where the door is or Just those those subtle things that make a big difference and and make it a pleasant experience. Anna: Yeah, I definitely having done a lot of interviews with with disabled transit riders, that driver training piece is something a lot of folks bring up and just, yeah, doesn't get done comprehensively or or with, you know, the disability community enough, I think. Brenda: At one point they had started using like a Uber type service with contractors and, you know, we were not aware that that was gonna happen and so a cart pulls into my driveway. It's dark and I you know, I can't tell if there's a marking on it, but they didn't roll the window down, they didn't very pleasant driver, but just didn't know those cues. So, Yeah, I'm very I said I don't like to be a squeaky wheel, but I will when when need be. Devin: wheel is not bad though. I mean you go back going back to the going back to that conversation you had with the legislator at the state, right? Like that that they want to hear the squeaky wheel, right? It makes me wonder. you know, Fort Wayne, I believe it's the second largest city in Indiana, 250,000 people. So it's a mid sized city. But I'm sure when we in national discussion, you know, much of our funding for our transit comes from the national level. If they're thinking about Indiana, they're thinking about Indianapolis, right? How can we elevate? I guess I have a two-part question. How can we elevate the voices of these mid-sized cities? And and what are we missing everybody, rural, suburban, urban, when we're we're not currently hearing enough from mid-sized cities like yours? Brenda: Well, I know, I know City Link is good about having public comment sessions. So I think that's a good thing to draw people in. keeping everybody informed and then giving them the tools, you know, to use proper verbiage and how to connect with the people that serve specific areas, wh who your representatives are, 'cause some people just don't follow that and know who their representatives are. So, City Link is really good about social media and putting things out to the community. So just that constant information being, you know, sent out and and letting people know how to move forward. I think the other thing is for people to understand that lawmakers are are people. I went through a program here called Prevent Blindness that did an advocacy training called Aspect and it was basically learning how to tell your story and how to tell it to those representatives. It was very intimidating to think ahead of time. And then we got on Zoom calls with them, because it was during COVID and they spoke just like you and I are speaking, you know. so they're they're people just like we are. I went in f in front of city council and and I never would have pictured myself doing that. But, you know, and it wasn't just me, it was it was twenty-five community members that got up and each spoke for two or three minutes at a time just to let people know the value. Anna: have to say City Link, I you know, for an agency with the budget that you all were working with, I was really impressed. And I I think some of what impressed me the most was the the messaging, that the way that that that the agency really framed the service, like the importance of their service. and I think I'm trying to I was just looking on my phone to see if I could find the slide. but there was, you know, all this messaging around like transit is is like is health. I'm trying I'll I'll find the the slide, but basically talking about and then like equity in every ride was another one of their slogans. I think and just like really emphasizing how, you know, without this service people can't connect and be part of the community and get their their basic needs met. I thought was was really cool. Brenda: Their primary focus is connecting people to life. Anna: That was the slogan, connecting people to life. Yeah. And it had this like heartbeat, yes, like logo, yes, yeah, yeah, yeah. And I was like, that is really a beautiful, yeah, beautiful way to think of Raven. Brenda: Can't say enough about the leadership there, you know. John came in and and he was handed some challenges and he has taken him in stride. He is open and willing to listen and I think that is is great. He's very knowledgeable and knows has a rich background in in transit. So and I know a big focus is trying to break that stigma and and encourage people you know, to to utilize the service more and realize the environmental impact of of fewer cars and and emissions and those kind of things. Anna: And that can be hard in a in a state too with, you know, the politics that Indiana has. My family's from the other part of the side of the state, southern Indiana. But, you know, I I one of the things I learned was that i even though many of the employment centers in Fort Wayne are out there they're outside the city boundaries technically, outside the sort of area and that that C Link is actually allowed to provide service. So yeah, like that piece. So some of the largest employers the the the agency can't provide fixed rent service to these areas by state law, they're not allowed to. And I thought that was so interesting, even though there's demand from these employers, from people working at these employers. yeah, yeah. And just that that like how state politics sort of impacts then what's possible. Brenda: the rural communities, it makes it really difficult difficult because our saw our program serves eleven counties in northeast Indiana. So all those little towns around us, you know, I find myself a lot of times saying, I wish you were in Fort Wayne, you know, I mean it gets cost prohibitive to take a Uber back and forth to work. and so that really kind of stifles people's ability to You know, they might want to be employed but but it's not cost effective for them by the time they factor in childcare and and transportation to be able to go to work. So until, you know, we get more com county involvement. you know, there are some counties that have like aging and and senior service that and include people with disabilities, but it it's very limited and and staffing of transportation organizations is hard sometimes. So having enough drivers to provide timely service can kinda impact that too. Devin: It's it still seems like you're doing so much, you know, for you know, for for with like with the cards that you're dealt, you know, and that's that's really an incredible I mean it's really inspiring to hear, honestly. I mean it's in a way it's you know, I I I love that spirit, you know, like that I feel like that is inherent in a in a lot of you know, these sorts of communities that face some sort of you know, some sort of difficulty in their life that y e even though you're facing this issue, you're able to push through. I found that s very inspiring. Brenda: I was not this outgoing most of my life. It was not until I got involved with the Foundation Fighting Blindness and began cheering the vision walk, that I f started to feel a little bit more bold and empowered. And so, you know, when I got hired in here at the league, my confidence began to grow. And I think I shared with Anna that I had been involved in a thirty year domestic violence situation. and it was on a paratransit bus that I made my exit. I grabbed as many things as I could. I got on that bus. The driver was trying to enter the information. I'm like, please just go down the street and finish that. And and then from then on, my I my life is just blossomed. I'm so blessed. And you know, people can look at at vision loss and they can get down and it is a loss. It's a grieving process, especially, you know, if you've developed it over your life. but in hindsight, you know, I'm very faith-based person. So I see God's hand in all each one of my steps in each phase of my life. And I realized that without my vision loss, I would not be in the position I am. and that not have made connections. I would not have been at the event and got to meet Anna and be here with you talking today. So I think everybody, if you Challenges are hard and you can't always see the reason for it, but but there is. And if you kinda embrace that and and focus on problem solving instead of focusing on the problem itself, I think that can be life-changing. Anna: Wow, thanks for sharing that that story. And I think, you know, your advocacy and, you know, learning and and for I think a lot of us with disabilities, like growing into that confidence is something we've had to grow into, right? And yeah, it really is. I think I I'm sure you are touching people's lives in ways that maybe you don't even realize now, but when you have that initial conversation with them and they they see you and in who you've become, really as a role model. Brenda: It's been an honor. And I I'd say I have the most rewarding job because, you know, people a lot of times don't know about us. We'll do events and people will say, I don't have a disability. And I will say, I will tell you, the disability community is the most welcoming community you will ever find because you can join that at any point in your life. And at some point all of us will probably have some kind of disability. So when people have been struggling and trying to find resources and not know where to go and then they get connected with us and they say you've given me hope or I wish I had found you sooner. And and there are a lot of tears, you know, it is it's it's so rewarding. It's so heartwarming and And our case coordinators and we actually host a number of peer support groups and I think that that people find comfort in that and learning from one another. And so that's what makes, you know, our program and centers like so important to each of the communities they serve. Anna: Yeah. No, and I think also the story, I mean that that power of, you know, how power transit power transit gave you that ability to get out of the situation. I think, you know, for many of us with disabilities, we, you know, we are dependent and codependent on other people and our lives and that can be good and that can be beautiful. But like there's times too when we need to be able to make some choices independently. And like that's why we need these public services. Brenda: I know. At some point I would like to delve into the rate of domestic violence among people with disabilities because, like you said, we are so dependent on those people and that's kind of where I was, you know. but once I got out and realized I could do it on my own and I had control over my choices, I just can't tell you what impact that had on my life. Well Anna: Thank you. Devin, anything else? Devin: I mean we normally end on asking what makes the our guests hopeful, but I think you pretty much wrapped it up right there without us even having to ask you. Anna: One final question. So if you want people to be able to be in touch with you or or look at you know, follow you or any of the work you do, is there is do you want to share that? Brenda: the leagues information, you know, email or the website is the hyphenleague.org. I get calls from all over the country. The internet is very powerful and somehow we've got amped up on our SEO because I get calls f even from around the world and so as my job my part of my job, I'm not limited by the counties we serve. And so I can provide at least find a center or an agency in their vicinity that can at least maybe direct them a little bit better. That Anna: That's cool. Brenda: you can do that. I know, that's what I had somebody moving from Europe to Canada and I said, Well let me at least get you on the same continent, you know, and then And then they can maybe help guide you a little bit closer there. Anna: Yeah, and just having some people, you know, again, that like feeling like there's someone out there for you. I know when I started reaching out to blind or disability orgs, it was hard to get someone on the phone. And finally when I was able to connect, it was like, Mm, yeah. So I'm sure, yeah, that's helpful. Brenda: It it is hard. And I do spend because I am a talker and because people are sharing their challenges and their struggles, you know, I give them as much time as they need to talk, but that also means that my calls are backing up. So it does take a little time to get back. So I will I will play devil's advocate on that, I guess, and and be like, Well, maybe it might just be that they're taking that extra time. So Anna: We'll let you get back to your calls and thank you for taking your time with us today. It's really good to connect. Brenda: Well thank you for having me. It's been a pleasure. Anna: Thanks for listening to Nonndriver. I'm Anna Zivarts. Devin: And I'm Devin Silvernail. If today's conversation resonated with you, please subscribe and share the show with a friend. Anna: You can also leave us a review wherever you listen. It genuinely helps other people find the show. Devin: Nonndriver is brought to you by the Nondrivers Alliance. Find more info at nondrivers.org. Anna: And this episode was produced by Devin Devin: Wanna get in touch? Email us at nondriverpodcast at proton dot me Anna: We'll see you next week.