American Action Fund for Blind Children and Adults
Future Reflections
       Fall 2023      FAMILY

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Sharing Blindness with Family: A Conversation on the Dynamics of Blind Siblings

Moderated by Seyoon Choi

From the Editor: Because genes are responsible for many forms of blindness, it is not uncommon for a family to have more than one blind child. This article is based on a podcast in which host Seyoon Choi interviews two pairs of blind siblings about family dynamics. It is one in a series of podcasts created by the National Association of Blind Students (NABS), a division of the National Federation of the Blind. You can find the NABS podcasts at https://nabslink.org/listen-our-nabs-now-podcast.

Seyoon ChoiSeyoon Choi: October is Blindness Equality and Achievement Month. We wanted to do an episode inviting two pairs of blind siblings who proudly accept their blindness. They have offered to share their perspectives on family dynamics, steering through their blindness and more.

Aida Talic: Hello. My name is Aida Talic. I'm nineteen years old, and I'm a freshman in college.

Edina Talic: Hi. My name is Edina Talic. I'm twelve years old, and I'm a seventh grader.

Joshua (Josh) Olukanni: Hello, my name is Joshua Olukanni. I am twenty years old, and I am a sophomore in college.

Tim Olukanni: Hello everyone! My name is Tim Olukanni. I'm currently a sophomore as well, and I'm twenty-three years old.

Seyoon: Thanks, guys, for coming into the studio! We're talking about family dynamics as blind siblings. How has your blindness factored in as far as family relationships? Tell us a little bit about that.

Aida: I think that's a really good question. When we were children my mother didn't know that my sister also had Stargardt's, so my sister had the fun task of being my helper.

Edina: When we go to the store, I have to read price tags and everything. It's a little annoying. It's a little difficult growing up, I guess. I try to help my sister when we walk places, but I kind of yell sometimes, and she gets a little mad.

Aida: It doesn't help that she's a little night blind, so she screams at me, and then she falls over herself.

Edina: I'm warning you before you fall!

Seyoon: Okay, Olukannis! Take a stab at it.

Tim and Josh Olukanni lean together affectionately.Tim: Me and my brother always had each other's back. We could talk about dynamics having to do with blindness, and it made us closer.

Josh: Honestly, our parents didn't really address the blindness until it was in their face, like when we were at an eye doctor. Other than that the word blind was never really used.

Seyoon: It's really heartwarming when you say you guys had each other's back.

Josh: I definitely feel like blindness made us a lot closer. It was like, “Hey man, you ran into that pole over there? I ran into that pole five minutes ago!” It's like I relate, I really do relate.

Tim: The word blindness was never really mentioned, but it was definitely implicated. My dad's friends would say, "When is your son going to start driving? He's seventeen, right?" Dad would say, "Yeah, he's seventeen, but I don't want him to be on the road just yet. It kind of scares me." And Dad's friends were like, "My kid is seventeen, and he's already doing cruise control." Dad never sat me down and said, "I'm going to start telling a lie about your vision." But clearly he wasn't comfortable telling people that I'm blind and I can't drive.

Josh: Same thing with our grandmother. When I came back from the training center and started using my cane, my grandma didn't like that very much. She'd say, "Don't go out with that! Don't take pictures with other people with that in your hand!" My brother went to his training center, he went to BLIND, Inc. As brothers we got comfortable with our disability, but the family, not so much.

Seyoon: I'm curious. I'm the oldest in my family and I'm the only blind person in the family. My younger siblings all are sighted. I'd be curious to hear how the perception of blindness has rippled across the family, there being not only one, but two of you. Do you think that has made it a little more comfortable, like that perception that you have each other's back?

Josh: There were certain events when it became more public, and people were confused. There were times when it was obvious, like if one of us ran into a pole or fell down a staircase. Then we'd say, "We're just clumsy!" and people would be more confused than ever.

Tim: It threw the family into disarray. Even if the information was out there, they didn't want to share the gravity of the situation. It was like, "Let's just be hush-hush about it." How can you be hush-hush about blindness? It's already out there, and it doesn't matter!

Josh: From my perspective, the perception of our family finding out there was not only one, but two family members, there was confusion. To my knowledge there aren't any other blind people in the family. Genetically it didn't seem to make any sense. I think people are asking each other, "Why are there more than one?" But I'm not there when they have those conversations.

Tim: It's always a closed-door discussion.

Seyoon: How about you, ladies?

Edina: Growing up they didn't know I was blind for a really long time. I think my parents were in a little denial at first. It was a long time ago. They're more open-minded now. Back then they thought I was going to have really good vision, and they thought I was going to be able to take care of my sister. I do have better vision than she has. I think ever since they found out about my vision they're more accepting about it.

Seyoon: Do you sense that they're blaming themselves?

Aida Talic stands outside with her guide dog.Aida: Truthfully, I feel like all of our parents are probably in denial. I think my parents have become a lot more aware of the disability, and they do some things that are different. They have some things that are accessible. They bought a washing machine that has Braille on it, and they had no idea! Sometimes they do little things and they don't even know they're making it accessible for us. In the beginning I think our mom blamed herself, because we know that back home in Bosnia our aunt and uncle were blind. The medical system back then wasn't advanced enough to diagnose the condition; they were just blind.

Seyoon: Was there the expectation that blind people can't do anything, that they're going to have to be taken care of for the rest of their lives?

Aida: Well, my mom has a saying, even before I got associated with the Federation or any blindness organization: "Being blind is not you being handicapped. You're disabled and you still get to do what everyone else does." That's her favorite thing to say. By the age of nine I was taught to do laundry and clean and do everything like a sighted kid, to the point where now I want to achieve even more independence. I will be going to the Louisiana Center for the Blind, and my parents are very excited to send me off.

Seyoon: If there's one thing you guys could tell your parents, honestly and publicly, about dealing head-on with blindness, what would it be?

Tim: Number one, there are resources out there. Help us become more and more independent, and then you don't have to worry. I don't want my more distant relatives to be ashamed, either. Blindness is just a characteristic.

Josh: To add onto that, it's all chill. Blindness doesn't mean you have to take care of me the rest of my days. I definitely feel like my dad had some shame, for sure. That doesn't do wonders for the mental health of the kid, seeing your pop being ashamed of something you have that you have no control over. So I'd say, "There's no need for you to be ashamed! It's all good. There are lots of people out here who can help us out. It'll all turn out hunky-dory!"

Edina: Our parents worry a lot, and I think sometimes they want to put us in bubble wrap. I just want them to chill out. Sometimes they have their guard up too much, especially my dad. He gets really mad if I don't hold the door for Aida sometimes.

Seyoon: So what's one thing you would tell him on this episode?

Edina: I feel like he just needs to let us be independent. Aida's old, she's not a little kid anymore. Dad needs to let her learn and be on her own. Mom, she wants us to do things on our own.

Aida: I would agree. Mom has always been on the more rigid side about expectations. Her expectations are sometimes a little too high! But it's achievable with the mindset that you can do anything in this world. Honestly, it's a great confidence booster. I want to thank her for the confidence to be sustainable by ourselves, to be confident with our mobility tools. My dad is on the more protective side, but he's come around a lot more than when we were younger. I still don't think he fully understands what blindness is, but he's trying to understand. Sometimes he thinks I can't do things I used to do when I had more vision. My sister and I just do normal things like siblings do. We argue, we show each other clothes, we watch TV shows in Anime, we read books.

Tim: My brother and I, we used to fight! We left marks on our house, man!

Aida: When I was about thirteen and my sister was six, her favorite game was for us to beat each other up! It looked bad from the outside, but it was out of love.

Josh: I remember my brother took me by the wrist and started spinning me around the room. He let go, and my foot went into the wall. There was an Olukanni-foot-sized hole in the wall!

Aida: I have a question for Tim. As the oldest, did you feel under pressure, like you had to stand stronger and show more confidence for Josh when you were younger?

Josh: I think in Nigerian culture the dynamic was that he was the older brother so he could tell me what to do.

Tim: Like at the dinner table, he'd get the plate last if we're passing around loaves of bread. Obviously I got the biggest piece! It wasn't like, "You're older, you've got to take care of your little brother."

Aida: If you guys went to certain events, did your parents try to hide your blindness, or just not take you to certain things?

Josh: Well, like I mentioned earlier, if Dad was talking to his Nigerian friends, saying things about why I wasn't driving, he couldn't just say that I'm blind.

Tim: Their friends had sighted kids who could drive themselves and have that autonomy. Our parents just didn't want to talk about it.

Josh: The people around us were ashamed about our eye condition, so sometimes we were, too. We didn't want to use our canes. We'd just walk outside, go to Nigerian parties. We'd pick our spot and stay there. We had a little vision, so we could kind of hide our blindness until it came to something more visual. If we were playing a sport, that was the worst! Then it had to come out! Me and Tim, we're really tall people. Then we'd start playing a sport, and we were the worst people on the team. They were like, "Why are you so tall and so bad?"

Tim: I feel like that's a male thing, even without being in a blind sibling relationship. I certainly felt that!

Josh: Even when people would question us, we'd say, "Oh, we just didn't bring our glasses with us."

Tim: People would believe it, too. We were essentially doing the job of our parents. We were hiding our blindness from the people who were inquiring. We were ashamed of it ourselves.

Seyoon: I really appreciate all of you for your honesty and vulnerability on this podcast. We're going to have to close. What are some sign-off thoughts you have for other blind siblings out there?

Edina: If you have a blind sibling, I feel like you should really be there for them and help them in any way. That doesn't mean visually, but any way you can do it for them. I feel like every blind person is different. You might have a weak point or a strong point. If you have a stronger point than one of your siblings, if you can do something that they can't, you can help them out. That's what I think.

Josh: Yes, I feel like for blind siblings, you have to be there for each other. In the day and age we're in right now, we're fighting against society. If you grow up in the same family, you truly have to have each other's back, because you're going through similar things. You can kind of bounce off each other with ideas. There's so much there that can be unpacked between blind siblings! Having that solid relationship is better for both of you, the better to help you navigate the world.

Tim: Yeah, the world's already a crazy place, you've definitely got to have each other's back. It's hard enough to grow up in this world! I can't speak for those people who are super, super close with their parents, but it's important to be close with your siblings, because we're there. That's all that matters.

Aida: I completely agree! I think that's true with vision or without, or with any other form of disability. With your siblings there's always going to be a bond, even if you don't want it. I'm the cool older sibling, but now my sister follows in the same track as me. She listens to music I listened to years ago, and I think, oh my God, that's so cringey looking back! But at the end of the day, the closest person to you will be your sibling. Your sibling should be your best friend, even if they don't like it—because they don't like it when you walk into their room and leave their door open.

Edina: You don't need to be the closest, you don't need to be each other's best friend, but you need to take care of each other, no matter what. If you're both blind you just need to be there for each other and cooperate in whatever way you can. I will always help my sister—but she might lose some privileges! Like I'm not reading those prices anymore!

Aida: Uh-oh! I could end up buying five-hundred-dollar shoes!

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