8 Things I’ve Learned from Growing Up with a Blind Person

My cousin Leia is blind. Has been since shortly after birth. The cause was retinoblastoma, a cancer of the retina. Both of her eyes were removed when she was still a baby. She has no memory of ever having sight.

Growing up with a blind cousin was the kind of novelty that could make a young boy popular with his buddies.

“Hey Leia!” I said. “Come here for a second.”

I was standing with my friends Jim, Mark, and Kevin. “You’re going to love this. This is soooo cool!”

Leia walked over to us.

“Watch this,” I said to my buddies. “OK, Leia, take out one of your eyes.”

The guys’ mouths dropped open. They looked at me. Then to her.

Leia smiled, reached up to her left eye, removed it, and held it out for them to see.

“Ewwwwwww,” the guys said in unison as they glanced at the artificial eye in her hand and then up to her sunken eye socket.

I was beaming. “Told you it was cool.”

Growing Up with a Blind Cousin

Leia is a year older than me, and we spent a lot of time together growing up, especially during the summer when I spent the weekdays at her house while Mom was at work. Aunt Penny had a strict rule that kids were to play outside during the day, which was fine by us.

We took turns leaping from the front stoop to see who could jump the furthest. We raced each other across the front yard and back. There was a slight dip in the yard just in front of the Wilhelm’s chain-link fence next door. When Leia sensed the change in level ground, she put her hands out, touched the fence, turned, and then raced back. In spite of my clear advantage, she won more of those races than I care to admit.

Her parents — my Uncle Rodge and Aunt Penny — had purchased Leia some cool gadgets, including a softball that had a beeper inside of it. She’d follow the sound of the beep which allowed her to position her hands in just the right place to catch it. She rarely dropped the ball.

During rests from play, we sat in the yard.

“Hey, Leia,” I said, poking an anthill with a stick. “Why do you make that noise with your mouth when you walk around the house? You know, that tsk-tsk sound.”

“It helps me not run into things,” she said.

“Hunh? How?”

“I can hear the sound bounce off stuff.”

“Really? Like sonar? Like a bat?”

“I guess so,” she said.

“Holy crap, Leia! You’re Batgirl! My cousin is Batgirl! Who needs eyes?”

“Eyes’d still be nice.”

“Yeah. Sure. But that’s cool!”

Leia leaned back on her elbows and turned her face to the sun to feel its warmth.

“What’s it like?” I asked. “I mean, what do you see?”

“I don’t see anything.”

“Is it black? I mean, when I close my eyes, I see black. Do you see black?”

“What’s black?”

She was no help.

Uncle Rodge tried explaining it to me once. “Greg, suppose there’s a football game going at the high school. Now, imagine that there’s a tall wooden fence around the field. The fence is blocking your view. You can hear the crowd and the crunch of the players’ shoulder pads, but you can’t see them. You follow?”

“I follow.”

“OK. Now, you notice a knothole in the fence about a foot above you. It’s too high for you to put your eye up to the hole, but if you reach up, you can slip your finger through the hole. So, that’s what you do. What do you see?”

“The fence I’m staring at.”

“No, Greg…what do you see with your finger?”

“My finger? I don’t see anything with my finger. My finger doesn’t have eyes.”

“That’s right!” Uncle Rodge bellowed. “You see nothing with your finger. Nothing at all.”

His explanation wasn’t particularly helpful at the time, but Uncle Rodge seemed pleased so I let him have his moment.

Uncle Rodge and Aunt Penny refused to let blindness rob Leia of life experiences and learning. She took lessons and became an accomplished pianist. When learning a new piece, she’d read the Braille score with her left hand so that she could play the treble line with her right. Then she’d switch hands and learn the chord progressions on the bass clef. Once memorized, she’d play the piece in its entirety. I’m not talking, “Mary had a Little Lamb” here. I’m talking piano sonatas by Beethoven and Mozart as well as complicated etudes by Chopin. It was breathtaking. You’d never be able to distinguish her playing from that of a sighted person.

She also took trampoline lessons and embraced them with great courage. She took nasty falls at first, especially if she got too close to an edge and one of her legs fell between the springs. The force of the unequal footing yanked her sharply off the trampoline and onto the pads on the floor. Sometimes she cried. Most times not. She’d hop back on the tramp and try again. In time, she was able to do seated drops and double flips and other spectacular feats.

I learned quite a bit watching Leia, but one thing stood out: blind people develop a profound tolerance for pain. It’s an unwelcome development that is thrust upon them as they endure a ongoing stream of minor injuries: stubbed toes, jammed fingers, bruises, hard lumps on the forehead.

Sometimes the injuries are more severe.

For a period of time, Uncle Rodge had a large farm truck with high side walls and no tailgate. We were outside visiting with neighbors when Leia turned to head indoors. She walked up the side of the driveway with her hands stretched in front of her to shield herself from the truck that she knew was near. In a terrible twist of fate, the high side wall of the truck threaded perfectly between her outstretched hands and Leia’s forehead collided with the wall’s edge with a hideous crunch. Uncle Rodge and I ran to her.

“You OK, Leia?” I asked.

Leia covered her face with her hands.

“Let me see, sweetheart,” Uncle Rodge said.

Leia dropped her hands. A knot the size of a walnut had already blossomed on her forehead.

“I’m alright,” she said and laughed. She slapped the side of the truck. “Stupid thing.” Her smile gave way to anger. She slapped the truck again, harder. Then walked inside.

“I can’t believe she didn’t cry,” I said.

Uncle Rodge looked pained. “She’ll cry when she gets inside. Not out here, because there are people around. But inside she will.”

Uncle Rodge was a strong man, a former boxer and a laborer. His consistent mantra to Leia was that she must be strong and self-reliant and must never, ever allow her disability to become an excuse for self-pity. But on occasion, beneath his tough-as-nails exterior, he revealed a genuine tenderness for Leia. I suspect he kept it hidden from her out of some misplaced masculine pride, but I saw it.

One year during the Christmas season, I saw several gifts for Leia waiting to be wrapped. They were the components of a higher-end stereo system. It must’ve cost a relative fortune for a family of modest means. I was immediately smitten with jealousy.

“Wow, Leia is lucky!”

“Yeah?” Uncle Rodge said.

“Yeah! I mean, how come she gets a nice stereo? I want one.”

Uncle Rodge looked at me square. “You like watching TV, Greg?”

“Yeah.”

“Leia can’t. She has no eyesight. What she does have is hearing. It’s how she interacts with her world. Listening to music brings her joy. And having a good stereo like this one, well…it might increase that joy. You follow?”

I was silent.

“You follow?”

“I follow.”

What I’ve Learned from Growing Up with a Blind Person

People sometimes feel awkward when they first meet Leia. It’s unnecessary. I can say from experience that there’s absolutely no need to feel uncomfortable.

Here are 8 things I’ve learned from my life with Leia that can help you interact well with a blind person the next time you meet one:

When you introduce yourself, say more than just your name. Blind people associate you with the sound of your voice. So, say a few things about yourself when you’re first introduced so that they can make the connection.

Blindness does not mean helpless. Leia raised a son on her own. She’s held down many jobs. She’s a homeowner and lives independently. She’s far from helpless. By the way, as a homeowner, Leia has one big advantage over the rest of us: lower light bills.

Offer to assist, but don’t be surprised if they don’t need it. Blind people have figured out life hacks that help them navigate day-to-day life quite well. However, when in a strange environment, it’s appropriate to ask, “Would you like me to guide you?” If they say yes, ask if they’d like to hold onto your elbow. This is Leia’s preferred way because she can sense the minute shifts in your gait when you’re about to turn and she will adjust her steps accordingly.

It is absolutely OK to ask questions about their blindness. They’re people first and blind second (or maybe third or even nineteenth). Sincere curiosity is not offensive, it’s appreciated. Take an interest. Ask questions.

Don’t be patronizing or talk down to them. How do you know when you’ve crossed a line? When you assume the blind person is less intelligent or frail or needs special encouragement. They don’t. Talk to a blind person like you would anyone else.

They don’t want pity. Their blindness is a disability, not a death sentence. Most who live with blindness have learned to prosper in spite of it and don’t need or want you to feel sorry for them.

Let them experience your world through touch. On our wedding day, Leia asked if she could see Dedee’s dress. Dedee said, “Sure.” Leia ran her fingers over Dedee’s dress and said, “Oh my, it’s beautiful.” So, ask a blind person if they’d like to touch your new haircut or feel your new shoes so they too can appreciate what’s going on in your world.

A blind person appreciates a playful jab at their expense or a good self-deprecating story. When Leia bumps into me, I like to bellow, “Watch where you’re going, Leia!” She either laughs or says, “You’d be easy to miss if you weren’t so damn big.”

Leia’s brother Dane is also blind. But unlike his sister, Dane lost his sight over time. His left eye was removed when he was 5 and he suffered a retinal detachment in his right eye when he was 16. By his mid-20s, he could perceive only a bit of light and that faded completely in a few years.

Once a few years ago, when our entire extended family was sitting around reminiscing, Dane asked, “Have I ever told you guys the story about the time I drove home from Peoria?”

“No, you haven’t!” my sister Traci said. “You actually drove?”

“Aw, Traci, driving’s easy. One hand on the wheel, the other hand on the ground.”

We all settled in to hear Dane tell the story.

“Well, my buddy Doug and I went up to pick Trent up from work at the Peoria Airport.” Trent is Dane and Leia’s younger brother. “Of course, Doug drove. When we got there, Doug got out and moved to the back seat so that Trent could drive home. I slid over behind the wheel.”

“When I came out,” Trent said, “I hopped in the passenger seat and said, ‘Let’s go. Daylight’s burning.”

“So, I started ‘er up and started driving,” Dane said. “Trent gave directions, ‘A little to the right. OK, a little left now. Start slowin’ down. Slower, slower. STOP!’”

“What was your eyesight like at this point?” I asked. “Could you see anything?”

“Not much. But once we got out onto the interstate, there was a fresh set of white lines. That made it a bit easier.”

“I gotta say, he drove pretty well,” Trent said. “He made it out of Peoria, past Marquette Heights, and through North Pekin before he got pulled over.”

“You got pulled over” I asked. “What for?”

“Weavin’ and bobbin’, I suppose,” Dane said.

He paused while we all laughed.

“What happened next?” someone asked.

“Well,” Dane said, “the cop took one look at me with my Coke-bottle glasses and asked me to step out of the car and follow him. When he saw me feelin’ my way along, he got a bit curt and ordered me to sit in the back of the squad car. He asked for my driver’s license. Of course, I didn’t have one, so I gave him my state ID. He ran my name through the database and handed my ID back to me. Trouble was, I couldn’t see what he was doing. I tried to grab it, but…” Dane pantomimed reaching out into the air in front of him several times but coming up empty each time.

“Did you get a ticket?” I asked through my tears.

“Two actually. I got one and Trent got one.”

“What for?”

“Driving without a valid license.”

Trent said, “Mine was for knowingly allowing someone to drive without a valid license.”

“I paid both of them,” Dane said. “Seventy-five bucks each. I still have my ticket. Wanted to frame it, but never got around to it.”

That’s my kin right there.

One Last Thought

Tennyson wrote that “’tis better to have loved and lost than never to have loved at all.” I’m not sure the same can be said for eyesight. I’ve often suspected that Dane mourns the loss of his eyesight in a way that Leia cannot since she has no memory of ever having sight.

So, I asked Dane. This was his reply:

“My position was always that one deals with whatever one must deal with. Sis was always a good example for me because of how independent she was and the fact that she never complained. There are definitely parts of life that are harder to understand if one has never had sight. The concept of colors is an obvious one, but there are many, many others. I’ve been blessed in many ways as well. I have a wonderful family, a wonderful church, and so many other things that  others have missed out on.”

People are people whether or not they have sight. A disability is an attribute, not a definition.

Or as Temple Grandin — a professor of animal science who happens to be on the autism spectrum — put it:

“I am different but not less.”

I can vouch for that.