"Everything began to change. I realized I couldn't see what the other kids were seeing."
Photos by Megan Monday
Melinda | Madison, WI
"My maternal grandparents were a huge part of my life. They were at every school play, every softball game, every recital, every doctor's appointment, everything. My father was not in our lives, but I lived with my mom and my sister, and my grandparents were basically like second parents. Especially my grandpa. I always felt that he was my dad.
Grandpa was the glue of our family. He fought in the Battle of the Bulge during World War II and was captured by the Nazis. He was in a POW camp for about six months. Grandpa never really talked about that experience with us kids. The only thing I knew was that because of it, he always wore hard shoes.
When I was really young, I used to sit on his lap swinging my feet, and I knocked his feet all the time. You never heard him holler out in pain, except for when I knocked his feet. I learned later that when my grandpa and the other soldiers were captured, the Germans took their boots. As a result, his feet had permanent frostbite.
I used to bring Grandpa's medals to school for show-and-tell. I was always so proud of him."
"We grew up in Middleton, Wisconsin. There were only a few folks of color there when we were little. My mom is German and Norwegian, my dad was African American.
My mom was always quietly advocating for us and doing her best to give us what other kids had when she could. When Cabbage Patch Kids were really popular, my mom and a couple of her friends went to Toys R Us for a midnight Cabbage Patch Kid sale at Christmas time. The store had gotten a shipment of dolls and had suspended them from a net tied to the ceiling. At midnight they were gonna drop these Cabbage Patch dolls and a hundred or so mothers were waiting outside in the line.
So they let the mothers in the store, and all of these Cabbage Patch dolls fell from the ceiling. My mom is in the back of the pack, and she sees all of these mothers going up to the pile, picking up Cabbage Patch dolls, throwing them back down, and walking away really angry. When she finally gets up to the pile, she sees that all of the remaining little Cabbage Patch dolls were black. So while all of these white mothers are angry, my mom was like, 'Score! We finally have black dolls!' That was the only black doll I ever had growing up.
Even though there were challenging times, we grew up with a strong sense of community. My sister and I had a little group of friends at our apartment building and we spent most of our time outside bike riding, doing Chinese jump rope, or playing with our Barbies. In the summer the parents would take turns watching all us at the pool. And then at the end of the day we'd have a cookout together."
"Things were going well, but everything began to change for me in second grade. Second grade is when the print in school books starts getting smaller, and when the teacher starts spending more time writing on the chalkboard and asking students to read it.
Because of that, I noticed that I couldn't really see what other kids were seeing. My teachers picked up on my vision challenges and asked my mother to take me to an eye doctor.
We went, and I did the eye exam. I couldn't see past the third or fourth line on the eye chart. The doctor got frustrated with me. He could not understand why I wouldn’t just read the rest of the chart. He started yelling and telling me I was lying. I told him I couldn't see the words, but he refused to believe me. I started crying and he quickly wrote me a prescription for eyeglasses.
When I brought my new glasses to school, my teachers were excited for me. But right away, I knew that even if I was wearing them, I still couldn’t see the writing on the chalkboard. I spent a lot of my time trying to wash my glasses in the sink at the back of the classroom, hoping that it would somehow help. I really didn’t want to tell my mom or my teachers that I still couldn’t read the board because I didn’t want to have to go back to the doctor and get yelled at again.
At some point, my lead teacher, Ms. Brisky, figured it out and told my mom that I needed to get reexamined. She was concerned, and also sent a couple of books home for my mom to read—books about kids and depression.
I went to a vision specialist at the UW who diagnosed me with the juvenile form of macular degeneration. Macular degeneration is typically an older person's disease. So by the time a lot of people get it, they're in their 60s, maybe 70s. Generally, a blind spot develops in the center of your vision and it keeps getting larger over time. There can be other vision complications, too. They had no clue how it was going to go for an eight-year-old girl. It was pretty much, 'Let's just see how this plays out.'
After I was diagnosed, my teachers let me wear sunglasses outside at recess. That was kinda cool because I got a bunch of different pairs of sunglasses to coordinate with all my outfits. But other than that, there weren't really a whole lot of upsides.
The summer after second grade, we found out that my grandpa was dying of cancer. The news devastated all of us. We spent as much time with him as possible, and he passed at the end of the summer.
Between losing my vision and losing my grandpa…the world was just coming at me a little too quick. I had no skills to deal with it. You just didn't do counseling or anything like that back then. I just had to do the best I could."
"My mom often worked behind the scenes for me, trying to find a way to make things better. Without my knowing, she had been going to the principal, the school social worker, the nurse, saying, 'My daughter needs help. I don't know what kind of help she needs, but she needs help. Who's going to help her, how can we help her?'
I had no idea what my mom did, all I knew is that I somehow magically ended up at this low vision clinic, and that is where I met Marshall Flacks. Marshall worked with the Wisconsin Council of the Blind and is a low vision guru. He was the first person who said, 'Okay, you have low vision and it's gonna be okay. You can still do a lot of things. You can still play with your friends.' Because of him, for the first time I felt like I could do this. My life was not gonna just end.
I was the only child in our district with low vision. The district hired a vision teacher just for me. Her name was Allison. Allison was this hippie from San Francisco wearing long skirts, Birkenstocks, and hand-knitted socks. I didn't quite know what to make of her, except that she sat down with me, my mom, and a representative from the school, and said, 'Let's make a plan for how we're going to help Melinda.'
Allison could tell when I needed more help, even if I didn’t ask for it. She would see how I was reading, just a little too close, and say, 'I think you need a different magnifier.' 'Okay, let's get you some big print books.' 'Let's get you some books on tape.'
Even with Allison’s support, school was hard. I never really felt that successful, in part because my vision decreased significantly every three to five years.
So, just around the time I would really get stuff figured out, I would go through another decline, and then I would have to relearn how to adapt.
Over the years, because my eyes kept changing, I never really had an idea of what I wanted to be—or even what I could be. I couldn’t worry about my future, because I had to focus on what was in front of me. But Allison worried about my future for me. She made sure my grades were good, and in high school, she talked to me about applying for colleges. So did my mom. My mom had worked two jobs throughout my childhood just to take care of us. I knew I wanted to build on what she had done for me.
My mom never wanted anyone to put limitations on what I could do with my life, and she didn’t want me to put limits on myself, either. With my mom’s and Allison’s encouragement, I decided to apply for college.
I chose UW-River Falls. With my visual impairment, I wanted a small school where I could get to know my professors and feel more comfortable. I wanted to use college as an opportunity to not depend on my family for help. I wanted to see if I could stand on my own out in the world.
River Falls had a small campus, so I could easily walk to the grocery store and get to my classes. Being on my own pushed me to become a bit more outspoken when I needed help, or when something was going on that was not okay. I was the only visually impaired student that they had ever had, so I had to teach their disability office how to help me: how to blow up my worksheets, how to talk to my professors and give them a heads-up about my needs. I would always do that on my own, too—I would go before classes started and introduce myself to my professors.
There were times when I felt unwelcome, like in my lab for Chemistry II. The professors just weren’t comfortable teaching me despite the accommodations I had set up with the disability office. But most of the time I had professors who knew my abilities, and who recognized that while I might be visually impaired, I'm a fully competent, capable person. In my hydrology class, for example, to do a survey we'd put on hip waders and go walking down the middle of streams, and I’d be right out there with the rest of my class.
I loved environmental studies and wanted to do something with the DNR. But by the time I was a senior, my vision had gone through another big decline. I could no longer read textbooks, not even big print books—and not even with the use of a magnifier. I realized that I was not going to be able to be a warden for the DNR. That was not going to be my reality."
"I spent a lot of time after college just struggling to find my place in the world. I moved back in with my mom and tried to find work.
Even with a college degree, because of my visual impairment I couldn’t get a job. I would apply for jobs but when I showed up, they would just assume that I couldn’t do a task and I wouldn’t get hired.
I applied at department stores, office jobs, cleaning jobs. No one would hire me. I fell into a depression and started to feel like I really couldn’t do anything…like there was nothing I had to offer the world.
After about five years of unemployment, I decided to go to Madison Area Technical College to get a second degree, this time in Human Services. I liked the idea of going into a profession where I could help people. I figured, I have issues, so who better to help serve other people who have issues than someone like me? I can give them the dignity they deserve.
After getting my second degree I connected with the Wisconsin Department of Vocational Resources, and they gave me a job coach. She had placed one of her previous clients, Calvin, at a nonprofit that was a gathering place for veterans and their families. Calvin was totally blind and was the site manager at the Middleton location. I went and had an interview, and he hired me on the spot. I was his new assistant.
I was there for a couple years, and then Calvin retired and asked me to take over as site manager. Most of our programs were driven by veterans and their families, so if a vet came in and asked for a program, it was my job to make that happen. We would have art therapy, massage therapy, a PTSD support group, trauma relief exercises...all kinds of programs.
Working for veterans was a good fit, and my vision impairment was even kind of a help in some ways because it didn't matter who came through the door: I couldn’t see you, so I’m not judging you! It could have been a US Senator or one of our homeless veterans, or someone in between. I greeted everybody the same, with a smile, and, 'I'm so glad you came today, how are you doing? I'm glad you are here.'
I never tried to pretend like I knew what the vets’ experiences were, because I didn't. Unless you have worn those boots, you don't know what it is to serve the country. We also served veterans' family members, and I did know that experience. Grandpa was my dad; he was my POW. I knew what it meant to have someone in your life—who you love more than anything in the world—who has a very deep and serious hole in their soul.
Sometimes I would get calls from veterans who were struggling with PTSD. When you have someone sharing their pain, that's a lot to take, and you start to feel a responsibility for their well being. You have to take it very seriously. It also means you have to give them the space to have those moments and go through all of the stuff they need to go through, so hopefully, they can come out on the other side of it. I always tried to be as supportive as I could.
I loved that job. I loved who I worked with every day. We'd have folks who came in and were so beat up by life and the world, but the more they came in, the more comfortable and confident they became. The more their light started to turn on again. I could tell that they would start to feel like they had a place where they belonged.
Belonging was something that I didn’t always feel in my own life, but the more I worked with veterans, the more I felt my own sense of purpose and belonging. My experience with vets showed me that I could find joy in giving back and advocating for others, as others had done for me. And I knew it would make my grandpa very, very proud."
-Melinda | Madison, WI