Finding Transportation Options After Vision Loss

Hadley

Finding Transportation Options After Vision Loss

Presented by Ricky Enger

Ricky Enger: When transportation isn't as simple as jumping in your car, you still have to find workable strategies to get things done. In this episode, Dia Kraft and Tara Perry join us to discuss transportation options after vision loss. I'm Ricky Enger, and this is Hadley Presents, supported by listeners who know how much the right conversations at the right time can help with adjusting to vision loss.

Welcome to the show everyone.

Dia Kraft: Hi Ricky!

Tara Perry: Hi Ricky!

Ricky Enger: It is wonderful to have you both and this is a huge topic and in fact, it is such a huge topic that there's no way the three of us, as awesome as we are, can really cover everything. So, what we're going to do is we are going to get this conversation started chatting about transportation and what we do and how we figure things out, but we also want to hear from those of you who are listening and if you have ideas. So, we're going to talk a little about how you can do that at the end of this episode. But for now, let's see how much we can cover. I think it makes sense to first put some voices to names and just get a bit of info about the two of you. So, let's do some intros. Tara let's start with you. Tell us a bit about yourself and if you're comfortable, just a little about your vision loss journey.

Tara Perry: Absolutely. My name is Tara Perry, and I have retinitis pigmentosa and really started losing my vision most likely in my late teens, early twenties, to becoming legally blind by the time I was 26. With my RP, I had very quick vision loss, so I drove a car to graduate school in August of ‘90, parked it in December and was determined legally blind by July of ‘91. Currently, I would say my vision loss is, well, I guess I usually just say I'm blind. That seems to be the most descriptive way to say that. I don't really have any functional vision.

Ricky Enger: Right. You had that quick vision loss with RP. Dia, how about you introduce yourself and tell us a bit about you?

Dia Kraft: Sure. My name is Dia Kraft. I live in St. Charles, Illinois. I have a disease called neuro optic neuropathy anterior which is the medical word for optic nerve stroke, and apparently it happened in my sleep. I woke up in the morning and I felt like every other morning and rubbed my eyes and washed my face and was having difficulty seeing out of my left eye. It turned out to be an optic nerve stroke during my sleep. The brain takes over the vision for the eye and does its work. Several years later, the right eye had an optic nerve stroke and that is a little bit unusual, a lot unusual, and it did happen in my sleep also and the same situation when I woke up. So now I have approximately 30% total vision. I do have some vision, which I'm very fortunate about. I have no peripheral vision. I also am classified as legally blind, and that's my vision issue right now.

Ricky Enger: So definitely a lot of adjustment there. So, what we are here to talk about of course is transportation and the beginning of that journey is the same for a lot of people, which is that you have to go through this process of giving up your car keys. For some of us, like myself, I never got to drive. That was my journey, but that's less common for most people. There's that moment of, okay, I have a car and now I have to give it up. So, I want to start there. Tara, you mentioned that you drove your car to graduate school and then you were not able to drive away from graduate school. So can you talk about that process of what you were thinking both from how do I adjust to this emotionally and what you were thinking at the time on a practical level. Did you have any ideas what you would do for transportation or was it so sudden that you really didn't know?

Tara Perry: I feel like I had a little bit of, I guess foreshadowing because as is so often typical with retinitis pigmentosa, I lost my night vision earlier. So, I had already begun limiting myself in terms of driving at night and mostly I was just uncomfortable, but that still left me a lot of daytime. I went to school for my undergraduate and then my master's in South Georgia, and if you don't know much about South Georgia, there's nothing but road. So, I was very comfortable with that type of driving, highway driving.

At that point I had stopped driving at night, but I was still day driving. It was a little more crowded there, with more people, and I began to notice that I just was uneasy. In hindsight, I was probably losing vision, and I didn't realize how quickly I was losing it. Again, you go to the doctor, and they say this is going to take decades. So, I'm thinking, okay, maybe I'll have to stop driving when I'm, who knows, 40, 50, 60. I wasn't thinking 10 months. So, I went to a doctor up there and I still had acuity, 20, 40 acuity, and what he said to me was, legally, you can drive. I'm not going to tell you to stop driving. What I will tell you is if someone steps off a curb, you may not see them. And to this day I get chills because that impacted me greatly.

What I knew then, whatever this inconvenience or difficulty was going to be with losing my vision and having transportation, I could get through that. What I knew I could not get through would be hurting someone else. So that convinced me, okay, I'm not going to take that chance. And so, I parked the car in December. But again, my motivation was very much driven by the fact that I wouldn't live with myself if I hurt someone else. So practically I had no idea what was coming. Honestly, I love to walk and that became my first mode of transportation, was my own feet and then immediately having to get to a cane.

Ricky Enger: Absolutely. So Dia, I suspect it is different for you. You probably did have a little longer to drive and to be accustomed to driving that was part of your life until it wasn't. So, can you talk about your process of giving up the car keys and what you were thinking?

Dia Kraft: Sure. It was really, really horrible. I don't have a good word to say about it, but I knew it was time a year ago. I had been driving only in the daytime and not in rush hour traffic and by no means in the morning. I was a salon owner and hairstylist, so I scheduled my clients around that timeframe when there wasn't any traffic. When the time changed and it was dark at four o'clock I panicked because I knew I had to get out of the salon to drive home half an hour before it got dark. I shook the whole way, just praying that it wouldn't get dark and I would be okay.

What changed me after the second eye stroke, I had terrible difficulty seeing and my peripheral was worse and worse. I was on my way home from work and I was at a stop sign and it was a comfortable drive until I hit that stop sign. I looked both ways to the right left, and I missed a young mother with a baby in a stroller by approximately an inch. I shook and cried and waved her on and motioned to her how sorry I was. She just lifted her hand and said it was okay, and I continued to drive home. I put the car in my garage space, and I sat there for probably a very long time and just cried. I knew in my heart it was time. How could I live with somebody that I hurt, not thinking about myself and giving up my car and my independence, but thinking about others. And that was probably the last time that I ever drove again.

Ricky Enger: Yeah, thank you both for sharing that. It's not an easy thing to talk about, especially as you're speaking Dia about, it's not just a car, a mode for getting from here to there. It feels like independence. It's about doing what you want when you want to do it. It's a difficult thing to get through. And so again, thank you both for sharing those stories. At this point, I don't know if it's safe to say you are on the other side of that because adjustment does continue to happen. I've never had a car and there's still times when I am feeling like I'm adjusting to not having that freedom of jumping in a car. But I am curious if you can remember a time when you felt like you had a transportation situation and you figured a way through it. It could be anything, your first time taking an Uber or maybe you had an emergency, and you had to figure out something quickly, and at the end of that you kind of said, hey, I did it. Tara, do you have an example of that?

Tara Perry: Yes, and I was going to respond to what we were just saying. Transportation is often just a continuing issue, it gets better. Maybe your acceptance of it gets better or if you move, it changes, or if you have friends or family, they move, that changes. So, there are so many moving parts for transportation, particularly having lived in areas where there's not much in terms of public transportation. For me, I feel like it's always an adjustment, and I think that's just part of having vision loss in terms of independence and how you function day to day. So, I'm a small-town person. I'm not a particularly city oriented person. I'm putting that in context to say I gravitate toward places that are smaller. That also tends to be places that don't have a lot of opportunities for public transportation.

In Mississippi, it wasn't a very big town. There were no taxis, no buses, no paratransit, and I didn't know anyone. So that was quite a challenge. Again, my residence, I would often locate where I could walk. I always walked to work as much as I could so I could handle that part. I could get to and from work. And then the rest of it became a big question mark because of my field, I taught recreation and recreation therapy. So, I connected with a recreation professional, and we were just talking about this issue of transportation, and she didn't know of anything either, but she said, “But let me get back to you. So, she did, and I ended up having some of the best transportation services I've ever had, and here's how it worked. I was able to take advantage of a group from the Methodist church that offered rides to senior citizens.

Now what I'm going to point out is I was 29 years old, and I was not Methodist, and it ended up just being that they were willing to accommodate. Again, there weren't many people who were blind living in this town. It was sort of an unknown for us all, but we set it up so that once a week I could run whatever errands I had in either a morning period or an afternoon period, and it was fabulous. I could plan my grocery shopping, I could get gifts, I could get cards, I could just do whatever I needed to do with a little bit of planning, and it was reliable. I think when you live in areas like that, it's about connecting. It's about asking, and it's about maybe you don't fit exactly into that box, but we're all willing to give it a shot.

Ricky Enger: Yeah, that makes sense. So, making those connections and as you said, hey, I'm not a senior and I'm not Methodist, but there happens to be the service. And so, I kind of put myself out there to take part in that. And is it in your personality to reach out and connect with people or was that part of it a little bit of a struggle, but you knew you had to do something?

Tara Perry: I am by nature an introvert, so that is something that my vision loss and my teaching career have sort of fostered in me. The staff member from the recreation area facilitated that connection, but I had to reach out to her to begin with. So, it's part of learning, it's part of dealing with the situation, teaching yourself to be an advocate, identifying your needs, being able to share and open up, and that great task of asking others for help, which is I think hard for most people. Hard if you're an introvert, hard if you're an extrovert is just something that we definitely have to get used to.

Ricky Enger: Absolutely. It is. It's a hard thing to do regardless. Dia, you're in a bigger city, so I imagine your experiences might be different because there are options in larger cities that simply don't exist in the smaller towns. So, what has your experience been with figuring out this whole transportation bit? And you might even still be in the middle of discovering some of that.

Dia Kraft: You're absolutely right. I am in a bigger city than Tara. First of all, you have to be your own advocate, which took me several years to figure that one out. I am in the state of Illinois and there are lots of opportunities for people in this state that are not made open and aware of unless you pursue it. And I was very persistent. I pursued it daily for several months. I Googled every day, especially when I was down in the dumps and emotional and feeling sorry for myself. Ultimately, I took care of it. I found several agencies that were able to help me. They were able to offer me assistance with getting to the store, driving me doctor's appointments. The hardest thing for me in the beginning was I have been approved for ADA, which is American Disability Association. I believe that is throughout the United States. I get a discount on every ride share and also on Pace transportation throughout Illinois. I get a big discount on Uber, so I do not hesitate to take it because it's so inexpensive.

Ricky Enger: Yeah, it's different for each state. So, they call it the ADA voucher. Each state ends up and sometimes even each region, and it's not across every state if you qualify for this and if your state provides it, because unfortunately some of them don't. While they call it an ADA voucher, it's actually a part of the special transportation system or whatever it's called in each state. But Googling will tell you a lot about that, or you can certainly call us at Hadley, tell us where you are, and we can assist in looking that up for you. You’re talking about this and being able to get out the door very cheaply, that sounds very attractive, right?

Dia Kraft: Yeah, it's wonderful. Actually. For me, a lifesaver losing my vision was a life change as everybody understands, but getting comfortable with the Uber and the topping on the cake is the price. It's amazing. It's absolutely life changing. But to get to that point, it took me one year. I was so scared to get into an Uber, even in the daylight. I never took an Uber at night until recently because I was fearful of it. I finally concentrated on taking baby steps, as I call it, and I did. I joined a park district, drove to different functions, theater luncheons and so forth. I remember getting into the park district bus and shaking, literally shaking of fear that something would happen to me. I made it to the theater, and I continued to try different things and challenge myself, and I did it.

Ricky Enger: And did you feel better after say the first time that you had taken that bus or that rideshare, or did it take a few times before some of that fear went away? There is that feeling of vulnerability and how do I know I'm going to be safe and all of that. How quickly do you feel like that went away for you?

Dia Kraft: It still hasn't. That's been an issue. I take all the precautions. If I'm out at night, I'm usually in a location where I have a friend or even if I'm in a restaurant, I will ask the hostess or whoever to walk me outside and I will show her or him the driver's license plate number on my phone and make sure that I get into the right car. That's in the evening because I'm totally blind in the dark. During the day I can recognize the license plate. I get into the car, and I know the person's name and I ask them their name; I don't reveal the name. Then I ask them, “Who am I?” And they say my name and then I get in the car. So, I take several steps before I'm comfortable, and it's amazing. I'm more relaxed once I get into the car.

Ricky Enger: And those are some really, really good safety tips. You do pretty much exactly my approach as well where they have to tell me who they're here to pick up. They have to give me their name as opposed to my saying, are you so-and-so? One thing I will do, not being able to see the stops that I'm passing, I will bring up Apple Maps or Google Maps and say, give me directions to wherever. And so, I have that knowledge of, okay, we are turning where it says to turn or we didn't turn where that said to turn, let me really be aware of what's going on so that I can press that little Uber safety button in the app. All of these different things we learn to do to feel safe. Tara, I don't know if you take rideshare often or if you were taking taxis when you were in DC, that kind of thing. What did you do to make sure that whatever mode of transportation you were on, you felt safe or less vulnerable?

Tara Perry: Yes, you mentioned that I also lived in a more urban area where I used the subway and then commuter buses. That was my first exposure to a rideshare program. And I'm learning from you guys because some of this stuff I don't do currently. I live back in Georgia and the only thing I have access to here is rideshare or friends and family. My concern is usually are they going to accept my dog? I do travel with a seeing eye dog. Oftentimes, for example, if I'm waiting at the doctor's office or something I'm usually in a place where many cars are pulling up and I'm thinking, is that one for me? Is that one for me? We all do. And somehow sometimes they don't understand how blind I am until I can't find the door. That's usually a pretty good indicator. And I'm like, is this the door? Yes, we have to have a sense of humor about finding the door.

I am very aware of where I'm going. It's not a very big place, so we're not going far typically. Oftentimes they'll have their GPS on and I'm aware enough of the directions to know if we're going in the right direction or if we’re going someplace totally different. I'll often just ask, what road are we on? Why are we taking this one? I just try conversationally to bring up something. Rarely have I felt uncomfortable, but again, now I'm in a small-town environment. I've had none of the issues here with my service animal.

Ricky Enger: Yeah, that totally makes sense. And because it's a small area, you might have fewer transportation options, but do you find that if you have to get somewhere immediately, there's kind of that small town vibe you could call on people to help you because everyone knows everyone? Or is it a little different than that?

Tara Perry: I've just been here four years, and again, I'm slower to get to know people. I think that does exist. It is more dependent on my willingness to ask.

So, I absolutely think it exists. And again, that's a personality thing for me. I'm getting better at it over all these years, but I do have some family here. I want to be careful about my independence and careful about what I ask and how much I ask because I don’t want our relationship to be me being dependent on someone if that makes sense. I want that balance in a relationship there, even with my family. So yes, I do think people are willing and I've learned to say, hey, I need to do this, and I can do it over the next three or four days, what would work in your schedule? If it is immediate, usually if it's something to do with my dog and everybody jumps up to say yes to that. I do think the willingness is there and they may not be aware of blindness, but then once they begin to see that exposure, they're not seeing a lot of taxis, there's no bus. Those options are not there. And people are also aware of that once they get to know you a little bit.

Ricky Enger: I feel like we're all at different points of this transportation journey, and I'm certainly still learning a lot too. There are things I wish I had known at the beginning of this. I always knew that I wasn't going to be able to get behind the wheel of a car. I wish I had known that there were more ways to get around than going door to door. And I know that sounds funny, of course I knew that public transportation existed, but I wish I had known kind of the freedom of that jump on a bus, get close to where I needed to go, and then go walking the rest of the way. And it's just something that I didn't grow up doing, and I think I could have spent less time waiting for people to drive me places had I been a little more adventurous and understood what was available and what it could offer to me. So for the two of you, and I guess we'll start with you Dia, is there some piece of advice that you would give someone now that you wish you had known when you had to give up those keys and start figuring out how to get yourself around?

Dia Kraft: Yeah, I think the most important thing is to be your own advocate to really figure out wherever you live, whatever town you're in, what agencies are available. I have three agencies that take me to appointments, to the grocery store, and when I can't reach those agencies or if they are busy, I have Instacart and that's an app to get food in. So, to answer your question, I should have started sooner. I should have been more proactive.

Ricky Enger: Yeah, thank you for that. And you never know what is out there until you start looking, because before then, you only know what you've seen other people do. So maybe you've seen people jump on the train and you know about that, but if you're not at that point you're thinking, I don't have any other options, but the train or an Uber, and if you start looking, you may very well find.

Dia Kraft: It's amazing because I did not recognize anybody with vision issues except an occasional person that was walking with a white cane. It's really difficult because people look at me as an example, looking at me and saying to me, you don't look legally blind. I replied by saying, “Well, what does a blind person look like?” Do I have to wear dark glasses? Do I have to walk with a white cane and a ball at the end of it? Will that make a difference? There are people all over this world that have difficulties or disabilities that we can't see.

Ricky Enger: And Tara, what about you? If you had to give a piece of advice to someone that you wish you had heard when you started out or even recently for that matter?

Tara Perry: I think what I would encourage anyone who's in a small-town area or a rural area, just areas that don't have a lot of public transportation options readily available. It works. And I guess I would say it works, but it works by what you guys are just talking about, looking to see what is there. And I've lived a lot in the south in my life, and you just begin to understand that maybe it is a church and maybe I don't have to be a member of that church. That's not an assumption I have to do. Maybe it's offered that way or maybe there's a social organization, maybe there's a Lion's Club or maybe there's a Kiwanis or maybe there's somebody that knows somebody. I also saw, when I lived in Maryland, there was something called Partners in Care, and it was people who were 55 and older, and at that time I was not, their adage was neighbors helping neighbors, and it was a volunteer group. And some people who could see they would volunteer to drive and people who had other opportunities might work in a store or they might make calls or do something different.

So I also would add that there are county organizations for most counties, and I have found that to be true, whether it might be a council on aging or if you're not there yet, oftentimes I'll also have something that combines with disability, and there may be services through there. You just don't know without doing a good bit of research, but it doesn't mean it’s nonexistent, it might be harder to come by. I guess there are some situations where it truly may not be there, but there are just ways, and it's much more about connecting, relating, and you might be that person's first interaction with someone who has vision loss or is blind and they don't know, maybe they need to know and they'll learn.

And a lot of that comes through that interaction and conversation. And I guess that would be what I would encourage is you might have to think outside of the box. That's an old phrase, but it helps to just think outside of a box and also just to open yourself up to asking because someone else might have an answer that you don't know. You haven't been a part of that community in that way. So, I also have heard about others who use Facebook. I live in this rural area; I need a ride. And have been quite surprised and pleasantly surprised by the response they've gotten from people they may not even know but might have a common interest or want to go to that park or want to go to that venue or do something. And it's being able to connect that way. I think the other thing is if you've ever driven, then when you start paying for rideshare, it is not inexpensive necessarily, especially if you don't have a Paratransit opportunity or a bus opportunity available. Uber, depending on the time of day, depending on where you want to go, it can cost me an extra $50 to go to the doctor's appointment, and that's before you add the tip. So, I actually had to teach myself to allow myself a budget, so I didn't resent it,

And then I'll actually maybe go get a pedicure or do something other than the necessities. It's okay if I spend that money to do that, if that's my budget, if that makes sense. Otherwise, I would be just doing the necessities. So, I had to find a way to give myself some permission and latitude to do something I just wanted to do occasionally.

Ricky Enger: That makes a lot of sense. When you think about how much money it takes to get out of the house, then you start to make the decision, well, I can never get out unless it's for an emergency. And that is very much a feeling, quite the opposite of freedom, right? Very

Tara Perry: Very much so. Yes.

Ricky Enger: Yeah. So, it sounds like really what you're both saying is two things. Advocate for yourself and be creative in how you try and find these connections or these transportation opportunities. Wow, this has been such an incredible conversation. I feel like we've covered a lot. I know we haven't covered everything, and I knew there was no way we would be able to cover everything because every place is different, every person is different, and every situation is different. And that's why we want to hear from you all in addition to what we have said today.

At Hadley, we're all about building community, making those connections. And as we found out today, that is incredibly important. So, what we're doing is we like to call this, Ask Your Neighbor. So, it's one of those things where, well, I don't know, so I'll ask my neighbor, maybe my neighbor knows.

And just making those connections, sharing resources. So, we do really want to hear from you. If there's something that you have discovered, some tips or trick that we didn't cover in this episode for finding transportation options that really work for you, please share those ideas with us. Share with all of your lovely virtual neighbors in the Hadley community. We really want to hear from you.

You can leave us a voicemail, or you can send us an email and there's even a way that you can record a message on our site. You can actually call our podcast line, 847-784-2870, and just leave that voicemail. We hope to include that in a future episode. I'll also have in the show notes ways that you can email us a recording, do it directly from our site as well. Any final thoughts as we wrap up here? This has been amazing, both of you.

Tara Perry: This is Tara, and I just thank you for the opportunity and I hope that others will call in their solutions because I think they're as diverse as our population, and so there may be so many other ways that we don't yet know about.

Ricky Enger: Thank you. Tara, how about you Dia?

Dia Kraft: Sure, this is Dia. I just want to thank you from the bottom of my heart.

Ricky Enger: Thank you so much, Dia and Tara for sharing your stories and your tips and your tricks, and it's just been a wonderful conversation. And thank you all for listening.

Hadley Presents is here because of listeners who know that real conversations about vision loss can make all the difference. Thank you to Hadley’s donors and thank you for listening.

Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at [email protected]. That's [email protected] or leave us a message at 847-784-2870. Thanks for listening.