My name is Harley, and I’m a 20-year-old guy living in a small city. I consider myself a technophile, although people online just call me a tech bro, because I’m always trying to find ways to use my devices to make my life easier. I’m constantly downloading new apps to try, whether it is for people who have vision problems or for just anyone.
I’m black, and I have albinism, so I don’t really look like my family, but I don’t look like anyone else either. On top of how albinism makes me look, it causes me to have a visual impairment and to be very sensitive to the sun. Despite this, I do the best I can to have a normal life. I’m in my third semester at the local community college with plans to transfer next year to the major university in our area. I’m majoring in—you guessed it!— information technology, and I hope to get a job as an app developer for a big company. Last summer, I got a small taste of working in the IT department of a company when I did an internship with a local business. No apps, but it was a good experience for me. I had to figure out some stuff with my low vision and getting co-workers to understand that between screen magnification and screen readers I can get the same work done they can. Luckily, my boss understood and with time, most of my co-workers recognized I could do the work.
It’s always a struggle with my albinism, though, because it feels like I constantly have to prove myself to people. My mom has been very overprotective because she doesn’t want me to be bullied by others. When I was young, she was glad that I had a teacher of students with visual impairments (TVI) who made sure I had everything I needed in class. Yet, when we were out in public and I would use the tools I used at school, like my handheld video magnifier or monocular, my mom would get visibly nervous. She already felt like everyone was staring at us because of how I looked, and then she thought I was making it worse by pulling out my tools. She wouldn’t say anything, but I knew she was embarrassed, and that made me feel embarrassed. You’d think all this embarrassment would make me be one of those people who didn’t want to use tools to help them see better. I wouldn’t say that. I have thick skin. I always notice when my disability makes people uncomfortable. That feeling of being different worms its way inside of me. But I don’t want to be ashamed of my albinism, because it’s just as much a part of me as my love for technology. I use my tools when I want to use my tools, because the bottom line is, I want to be able to see what I’m doing so I can get things done!
It took me a while to get to a point where I was comfortable enough with these tools to take advantage of them, though. In high school, I had an O&M specialist named Mrs. Presley. She was the first person to teach me how to get around in a world not designed for me, namely by using all my senses when traveling to a new or unknown place. The most important thing she did for me, though, was show me how I can use a smartphone to download apps to use during travel. The first time I used a navigation app in an unfamiliar area, I was sold. Having Google Maps tell me where I need to turn is extremely helpful. I use other apps to preview my routes, add in my own notes, and look up transit info. I have Uber, Lyft, and Via downloaded, so I always have options to get around, along with the local bus app and a couple of traffic apps, so when I ride with a friend I can let them know what parts of town to avoid.
When I’m not spending time traveling, though, I’m with my family. My dad has not been very involved with our family since I was really little, so I live with my mom, who is incredibly busy, driving to and from a local hospital for her job as a nurse. She’s always busy taking care of my brother and sister. Angelica is 17, and she drives herself around, but Gabriel is 15 and can’t seem to talk about anything but getting his driver’s license when he turns 16. Most of the time, I don’t let it bother me that they can drive, and I can’t. I just let it go in one ear and out the other. But when I turned 16 a few years ago, I remember being angry that I couldn’t go get my driver’s license like all the other kids in my class. My mom eventually noticed the change in my mood, and she confronted me about it, and I told her the truth: that every other kid in school was talking about driving and buying cars. I talked about how lonely I felt, each comment about a new car stung, and being the only one who didn’t get to move on to that next chapter in life. I felt like a little kid, stuck carpooling, and riding in the backseat. But mom knew exactly what to say to snap me out of it. She reminded me that I’m a whole person, not just my disability. We talked about my job doing yard work for several neighbors and earning my own money that I put in my own bank account, when I didn’t spend it on tech or music, and that in our church I had gone through confirmation, which meant that I was now an adult. She reminded me that it didn’t matter that I couldn’t drive. For months I had been taking two buses to visit my cousins who live an hour away, and that took much more maturity than driving a car.
A few weeks later, through my O&M specialist, I met a college senior with a dog guide. He and I clicked immediately. He was majoring in engineering and cared a lot about technology with the same passion I did. He told me the he had taken an Uber to get to my school. At that point, I didn’t know anything about rideshare services like Uber, so hearing him talk about this was exciting for me. George did many things I had never tried. He talked about tutoring people in his dorm in math, and instead of asking for money, he asked for rides. Whenever he needed to go anywhere like the grocery store or to get over to his girlfriend’s house, he had a ride. At that time, I could hardly imagine that kind of freedom.
I asked him a lot about his dog guide, Nacho, as well. He said that having Nacho gave him a lot more independence than using his cane. He made sure to point out the responsibilities though, such as having to care for the dog, and that it’s a lot of work to keep up its training. He also told me that I had to have money for dog food and vet bills, which may seem obvious, but I’d never thought about having a dog guide before because I have usable vision.
I like to think of myself as independent when I go out because I make my own choices about where I go and how I am going to get there. From my apartment, I can walk to friends’ houses around the neighborhood, the convenience store, and a couple of fast food restaurants. My cane has advantages too; it serves as a really obvious signal to others that I have trouble seeing.
When it comes to traveling outside of my neighborhood, I can take the bus to get to most places. In my city, you can buy a monthly transit pass for college students. It’s a good deal if you ride the bus a lot like I do. I’ve gotten to know a lot of the bus drivers, and when they see me getting on the bus, they know I want to sit up front. I use my phone to follow the bus route and listen to the streets we are passing so I know when we are near my stop. Sometimes, my phone isn’t enough help, so I have to ask the driver questions or talk to other riders, but most everyone is more than willing to help.
College has been going all right for me. I’ve been more self-sufficient and capable of doing more than I have ever done in high school. The biggest example I can think of is photography. Since I was in high school, I have really enjoyed it, although I didn’t have the resources I needed back then. I had to work harder to overcome my disability. I joined a photography club in my junior year in high school, and most people in the club weren’t very understanding. A blind kid in a photography club? You must be joking. It didn’t matter that I could see, that I was passionate, that my disability helps me to create unique art. They had this idea in their heads that I would never succeed, so they never gave me a chance. I was grateful when I was able to leave my high school and join my community college’s photography club.
The first time I went to a meeting, I took the bus there and had planned to take an Uber home. During the meeting, I started talking to a nice woman named Monique, and she made an innocent comment about how close I was holding my camera to change settings. I explained my condition to her and happened to mention that I didn’t drive. She asked me how I would be getting to and from the meeting, and I told her. She said she’d be glad to give me a ride home, which I thought was great. I’ve been riding with her ever since. She won’t take any money from me, so last week I gave her some mattes I cut for framing photos. I thought they would look great with the photos she had taken of her kids.
Overall, I am happy with the way I’m managing my transportation now. I’m thinking about going to graduate school out of state, and when I do, I may reach out to Mrs. Presley to see if she knows an O&M specialist in that area who can help me be ready for the next phase of my life. There will be new things I will have to figure out, but I know I
have enough confidence to know that between my apps and my own skills, I’ll make it just fine.