Editor’s Note: Today is Family Day in the Canadian provinces of Alberta, British Columbia, New Brunswick, Ontario, and Saskatchewan. In this speech, presented by Joanne Gabias at the 2018 National Federation of the Blind (NFB) convention in the United States, she speaks about her experience growing up in a household with two blind parents. Joanne is the daughter of Dr. Paul and Marry Ellen Gabias, who live in Kelowna, BC. We are thankful to Joanne for granting us permission to share her speech with you. This speech can also be found in the August/September 2018 edition of the NFB ‘Braille Monitor’, the March 2019 edition of the CFB ‘Blind Canadian’, and in it’s original audio format on the NFB website.
Hello, everyone. My name is Joanne Gabias, and I am honoured to speak to you all today. I was four months old when I attended my first convention. Although I’ve missed some throughout the years, this is my twenty-first. [applause] I have come to convention by plane, by train, by bus, and by car. I was hoping to go by boat next year, but it would be hard to accomplish going from Arizona to Vegas. Maybe 2020 will be in Hawaii or Puerto Rico.
My convention experience has changed over the years. I used to be at NFB Camp or what is now called NFB Child Care with my brothers Jeffrey, Philip, and Elliott. I remember at the Atlanta convention all of the kids went to the Coca-Cola factory. I got really sick because I pigged out on all the free soda from all over the world. My parents wouldn’t normally let me drink soda. That was an early lesson on how parental advice is worth considering even when they’re not there to make you do what they say.
When I was too old to be babysat, I started working for NFB Camp, and now I am a blindness professional. [applause] Before you all think that my childhood is what got me into this field, I would like to point out that I never even knew that the field of orientation and mobility existed until I was finishing my undergraduate degree and didn’t know what to do with my life. I love my degree in linguistic anthropology, and I wouldn’t change it for the world. But I couldn’t make a living wage as an anthropologist unless I became a university professor, something I definitely didn’t want to do. In fact I always said I would never become a teacher or go into psychology because that is what my dad does, and everyone assumed I would follow in his footsteps. Well, now I know never say never, because I obtained my masters in guidance and counselling, and I am currently an orientation and mobility instructor at SAAVI Services for the Blind in Tucson, Arizona.
I am here today for you, for your kids, and for the future children of blind parents. I hope that my story will help you convince doubters that children of blind parents can and do live wonderful lives. [applause]
People made a lot of assumptions about my life growing up—some true and some not so true. Both of my parents are totally blind due to retinopathy of prematurity. When people learn that, I get comments like, “Oh, I’m so sorry;” or “Wow, how is life growing up with blind parents?;” or “Oh, you must’ve been a big help around the house.” Most children of blind parents can probably list off a bunch of other naïve comments that we get all the time. My answer is always, “Well, I didn’t know any different, so it was normal to me.” And, quite frankly, my childhood was a pretty typical one.
During my schooling at Louisiana Tech University, I attended immersion at the Louisiana Center for the Blind. Even after my immersion ended, I attended a seminar at least once a week throughout my entire program. One time the seminar question was “Who is the first blind person you met, and how old were you?” Pam Allen called upon me to speak. I told the group that I was in kindergarten when I met my first blind person. Clearly that’s an odd answer coming from a child whose parents are blind. It was in kindergarten that I first realized what people meant when they use the word. Before then, my parents were just my parents. My parents fed me, dressed me, and took me to school. My experience wasn’t any different from anyone else’s. I also thought it was weird at the age of four that everyone would say to me, “Oh, you must be a big help around the house.” Like what the heck was that supposed to mean; I’m four! I’m pretty sure that those comments ingrained in me and my brothers the determination to do the least amount possible around the house outside of our chores. Even getting us to do those were hard; so Mom, next time you need to yell at Elliott to take out the trash, blame it on the world for making us want to prove that the stereotype of saintly children helping their poor blind parents wrong. [applause]
I was spoiled. My mom made my breakfast and lunch every day until I graduated from high school. Even in university, if I asked or if she saw I was stressed with work or school, she would make me food. When I go home to visit, I have a list of favourite foods that I ask my mom to make. As everyone knows, there are just some things that taste better when mom makes them.
There were expectations, too. On each of our thirteenth birthdays, my mom taught us how to use the washer and dryer. She said, “You are a teenager now. I’m no longer doing your laundry. If you want clean clothes, you’ll have to do them yourself. [applause]
My family has always been very health-focused. My dad runs the Gabias Wellness Center out of our family home. Some of you might have met him in the exhibit hall talking about all the Nikken wellness products they offer. When I was younger, my dad was very strict about what we ate. My brothers are so lucky that he let up as we got older, but, as you know, parents are always the hardest and the most cautious with the first born. I even have proof. All the pictures from my first birthday party show my dad following me around making sure I was okay. I was running away with an annoyed look on my face. I already wanted to be my own person. By the time they had their fourth child, my parents were just satisfied that the youngest was wearing clean underwear.
When I was in kindergarten, my mom made a cake to bring to my class for my birthday. My parents had chosen not to have chocolate in our house, so my mom tried to make a cake using carob. If you have never worked with carob, it frankly tastes like dirt. My mom made carob frosting as well, a double dose of yuck. Carob doesn’t spread well. The frosting started clumping and breaking the cake. It was just a mess. I think Apple must’ve seen a picture of this cake because they made an emoji that looks exactly like it. [laughter] I think voiceover calls it the smiling pile of poo. I remember that day so vividly. The teachers tried to shush the kids when they asked why the cake looked so weird. The teacher assumed that it was because my mom was blind. I was annoyed, because I knew it wasn’t my mom’s blindness or her cooking skills. It was because of that stupid carob.
Mom can bake good stuff. I planned a surprise sweet sixteen party for my best friend, and my mom made a giant chocolate (real chocolate) heart-shaped cake with raspberry filling. Everyone loved it so much that all of my friends asked her to make one for their birthdays as well.
Misconceptions and confusing problems caused by other factors with problems caused by blindness happen all the time. My family lives in the beautiful Okanagan Valley in Kelowna, British Columbia, Canada, minutes away from a spectacular lake. When I was ten, my family bought a speedboat. Growing up we spent most of our summer on the lake waterskiing, tubing, wakeboarding, and swimming. Our family knew a man who drove for us. It was only natural that he would also drive our boat. When I was twelve our driver had a stroke and was in the hospital for most of the summer. My dad tried to hire random people to drive the boat. The cab driver he chose bent the propeller when he ran aground. The twenty-one-year-old son of a friend gouged the side of the boat while docking at a cost of $250. Dad was so annoyed with incompetent boat drivers that he started looking into the boat licensing process. He found out that twelve-year-olds can get a boat license in Canada. Conveniently I had just turned twelve, so I was volunteered. He paid for me and two of my friends to get our boat license. Dad sat in the class as we learned nautical rules and took the licensing exam, which we all passed. The only problem was that we completed the class without ever coming near a boat. The next day my dad took me out on the boat at 6 a.m. when there weren’t many boats on the lake and showed me what all the controls did. His family owned a boat when he was growing up, so he had been around them all his life. Whenever my dad gets a new gadget of any kind, he figures out every button, lever, and widget. So he knew exactly what to do with his boat. I remember being extremely nervous because of my dad’s high expectations. I remember my dad telling me, “Put it in full throttle and turn the wheel.” That scared me.
I said, “We’re going to flip.”
Firmly he said, “If you don’t do it, I will. You need to know how the boat will react to whatever you are doing.”
Everything I learned about boating, towing a waterskier, docking, and just cruising along I learned from my dad. I would like to point out that I have never put a scratch on our boat, and neither have my three brothers who were also taught by my dad. [applause]
When we all started to learn how to drive cars, my dad insisted that we take formal lessons. Dad went to every lesson with us. My dad went through the program four times to be exact. If he couldn’t make it to a lesson, he would have to reschedule because he wanted to make sure that he knew what we were being taught and that we were doing what we were supposed to do when we were driving alone. Even though he wasn’t the one directly teaching us this time, my dad was very much at the centre of our driving experience.
As I grew older, I became more and more independent. I traveled all over Canada and the US. I even went to France, Guatemala, New Mexico, and Belize in high school and in college. Even when you’re legally an adult, sometimes you still need help from your parents. When I came back from Guatemala, my cell phone stopped working. I had insurance, so I brought it in to get it fixed. I spent three months contending with loaner phones that didn’t work and my original phone coming back to me more broken than before. I was complaining to my mom that they kept giving me the runaround, so she came to the store with me. But my mom is a very calm person. She doesn’t really raise her voice, but when she’s mad, you know it. My mother calmly but powerfully explained that this was unacceptable, and they needed to figure things out. Just like that I got a new upgraded phone at zero cost to me. If I had known that this would’ve been the outcome, I would’ve brought her in the first place. This skill is something I still don’t possess. I think my brother Jeffrey inherited this skill. Luckily for me I can still call on my mom when I’m in need.
Some kids are denied the chance to grow up learning from their parents, especially children of blind parents. When I was in the fifth grade, my life could’ve changed drastically. Some random lady came to school and separately pulled my brother and me out of class. She started asking me questions about my parents: whether my father hit my brother or if I was safe at home. I thought they were the weirdest questions ever. I was sure that they took the wrong kid out of class. These questions didn’t even remotely make sense in my life. When I came home, my mom was very upset. The random lady had been to our home too. I told her about my experience. My mom became livid. She had not been given the courtesy of being told that they would be interviewing us at school. The weird lady was from social services. Someone made an anonymous call about my parents. The complaint was that my dad might—just might—have hit or spanked my brother, our house was messy, and that my brother went to school with a dirty shirt. Can anyone in the audience tell me that your house is never messy and that your kids or you have never dirtied a shirt? I sure can’t.
After talking to us kids and visiting our parents at home, they realized that the complaint was unjustified. Luckily they never bothered us again. [applause] But that one incident has lingered with my mother to this day. All of her children are legal adults, yet she still wonders who called social services. We all know that social services didn’t show up because my dad might’ve spanked my brother or because of a messy house or because of a dirty shirt. They came because the caller said that both parents were totally blind. That was the real issue. It didn’t matter that my mother was a stay-at-home mom or that my dad was a university professor. Even though we had a parent at home to take care of us and a parent making sure we had the money to live a happy and prosperous life, the thing that mattered to the social workers was that my parents were blind. I know that many other parents have either experienced this visit or live in fear of this visit.
I recently testified at the Arizona House of Representatives in favour of the right to parent bill which was passed and signed into state law this spring. [applause] One of the committee members was asking a lot of naïve questions about how my parents knew when we were doing something wrong. He seemed convinced that I probably got away with a lot of things because my parents couldn’t see. I told him that when my brother Philip was still in preschool, my mother took him to the store with her. While she was busy in the checkout line my brother quickly grabbed a pack of gum. On the way out mom noticed that he was being very quiet. She heard him fiddling with something. She did a quick search of his pockets and marched him right back into the store and asked for the store manager. She made my five-year-old brother confess what he had done and apologize. [applause] Then she paid for the gum. The store manager said, “Well, you’ve paid for it now, so you can have it back.” My mom said, “Absolutely not! I’m not rewarding this behaviour; throw it out.” My brother was so embarrassed that he never stole from a store again. [applause]
The committee member seemed unconvinced. He said, “Well, he was young. I have teenagers. It’s really hard to keep track of them.” The ways that my brothers and I got caught may be unconventional, but no matter what, we always got caught. In middle school the fad was to have your midriff showing, a fad that happens to be coming back recently. It’s funny how many things have come back from the 90s. Shout out to the 90s babies out there! [cheers] Well, I wasn’t allowed to show off my belly, but I wanted to be fashionable. Besides, it was hard for me to find shirts that fit because I’ve always been tall. I’ve been five-foot-nine since the seventh grade. Before I left for school, my parents would ask for a hug. This is how they would sneakily check to see that my shirt was long enough. My dad would ask for a hug from my brothers to check their breath to see if they had brushed their teeth. I could go on and on about all the ways we got caught, so when someone says “Oh, you must’ve gotten away with a lot of things,” I just laugh because they are so, so wrong.
When I was in high school, I did an exchange program. Sara, a girl from Québec, was to spend six weeks in my home, and I would spend six weeks in hers. We had to fill out a profile about our life, interests, parents, what they did for work, etc. There was no line asking if my parents were blind, so I didn’t write anything. It wasn’t important. We got each other’s paperwork in June, but Sara didn’t come until the end of January. On her way to our home, she met the program coordinator who remarked on how brave Sara was to come to a home run by two blind parents. Sara started freaking out. She even called her mom. Her mom told her that she should just see what it was like before she panicked and came home. When Sara arrived at the Kelowna airport, my dad and I were waiting for her with a big sign saying, “Bienvenue Sara,” meaning “Welcome Sara” in French. We picked up her luggage, which my dad carried. When we got home, mom made her a snack, and we talked with my parents for an hour before my new friend and I went to my room. She finally told me about her conversation with the coordinator and said, “I realized once I got here that your parents are supernormal, but why didn’t you tell me before?” I told her it wasn’t important to me, so I didn’t really think it was necessary to say anything. As things developed, I was happy I hadn’t told her. When I asked her what she would’ve done if she had gotten this information in advance, she admitted that she wasn’t sure she would’ve even come. Sara had a great time. It became so much more than a nice trip. We call each other sisters to this day. [applause]
When she had a semester off a few years later, Sara decided to come back to Kelowna and live with us for three months. Not only do their flesh and blood love my parents, but so do my friends. Sara was not the only one who lived with us either. I had four different friends live with my parents over the years. My house was the place to be. I wish my grandparents could see our family now. My grandmother was very upset when my dad married a blind person. She didn’t have a problem with him being blind, but she was scared that if he married another blind person, their children would grow up socially awkward because they wouldn’t learn any visual social cues. My grandmother died when I was one, so she didn’t get to see any of us grow up. I know my grandmother is biting her tongue up in heaven right now.
My mother, Mary Ellen Gabias, used to work at the national office in the 80s. She was in charge of the Job Opportunities for the Blind. My father, Paul Gabias, met my mother through that program briefly and then again while attending a leadership seminar. My mom happened to be one of the ones giving a tour for the seminar group. If you have ever been to the national office, you know that everyone helps out where they are needed no matter what their position may be. Well, my mom says that that was the worst tour she ever gave. Anything that could go wrong did. The ancient freight elevator got stuck with everybody onboard, among other minor disasters. My father, however, knew he had found his future wife even if she didn’t know it yet.
So I would like to thank the National Federation of the Blind. Because if it wasn’t for this community, I would not exist. [applause] Although I may not be blind, this is my family, I am a Federation baby, and this is my family reunion. [applause] I am part of the next generation of Federationists. The next generation may not all be blind, but we know that blindness is not the characteristic that defines you, me, or your child’s future. Every day we live with high expectations of blind people. We don’t understand why there are low expectations. We are the result of the dreams of blind people. We live the lives you fought for. We know that blindness doesn’t hold you back because you have taught us. Thank you.
Like the National Federation of the Blind, the Camp Bowen Society and the Pacific Training Centre for the Blind believe in the abilities of blind and Deafblind people. This includes the right to parent as a person who is blind and/or Deafblind. Through the Bowen Island Recreation, Training and Meeting Centre we will give Canadians who are blind or Deafblind the confidence they need to live the lives they want, whether or not that includes raising a family.