What I Wish My Parents Had Known
Authors: Ronza Othman, Civil Rights Attorney; President, National Association of Blind Government Employees; President, National Federation of the Blind of Maryland
Keywords: networking, advocacy, self-determination, blindness skills, National Organization of Parents of Blind Children, National Federation of the Blind, Family Engagement Visioning report priorities, Leber's Congenital Amaurosis, braille, O&M
I am so grateful and honored to have been asked to talk with you today. In preparing for this meeting, I wondered what possible words of wisdom I could share with you all. And then I realized that the thing that I should share is what I wish my parents knew when they learned that their child was blind and as they raised me.
I’d like to tell you a little about myself first. I think understanding my story might help contextualize some of what I’m going to share with you. I’ll ask for your indulgence because, like most people, my favorite subject is me.
I am the sixth of seven children, and I was literally born within a few weeks of my parents immigrating to the United States from a third-world country. We are Palestinian refugees, and our family was displaced twice between 1948 and 1981 with a possible third displacement looming when my parents’ and siblings’ visas came through. Had I been born just a bit earlier, or had the visas been approved just a bit later, I would not be here with you today. I’d have to have stayed in war-torn Palestine, and there is no life for a blind woman in war-torn anywhere, let alone Palestine.
Anyway, I was born on the steps of the county hospital in Chicago. I was early to my birth, but since then I’ve never been on time, let alone early, again. My parents were happy for a healthy baby, though they had hoped for a second boy instead of a fifth girl. My parents got over it pretty quickly, and I became my dad’s favorite toy. My older brother decided he’d just pretend I was a boy, and things were right with his little nine-year-old heart.
I talked, and I walked, and I got into trouble like toddlers do. But when I was 14 months old, my uncle, who was in medical school, noticed that my eyes “danced.” He did that thing that adults do with kids to try to get them to track fingers and shapes. I didn’t track. He told my mother she needed to take me to the doctor, and she resisted, as any busy mom of six kids under ten would do. He insisted, and she took me to the pediatrician. And thus began a lifetime of invasive, often painful tests, procedures, and medical experiences.
Pretty quickly, the doctors realized I was legally blind, but they couldn’t figure out how much usable vision I had. I made eye contact, I didn’t bump into most things, and I recognized faces within a reasonable distance from me.
Discovering I was blind changed my relationship with both of my parents. My father had no idea how to deal with a disabled kid, so he became awkward around me, and he ultimately just didn’t include me in things. I remember being five or six when he took my older sister and younger brother out for ice cream and refused to take me. He said it would be too dangerous. We had a strained relationship for most of my life, and it wasn’t until I was an adult that I came to understand that his disinterest in me came from fear and guilt, not from lack of love. We fought hard to establish and maintain a relationship when I was in my 30s, and we are now very close.
And so my first piece of advice is not to fear your child or their blindness or to feel guilty for it. They will think you are burdened by them, ashamed of them, and don’t love them.
My mother, on the other hand, made me her project. She took me with her everywhere. The other kids took turns going on errands with her or going to visit friends, but every trip was my turn. She spoiled me rotten, and while my siblings loved me, they felt like sometimes they didn’t get her attention. Kids don’t care if adults feel sorry for kids with disabilities or if adults think those kids with disabilities need a little more attention. They just feel hurt and neglected because they don’t view disability in the same way. She figured out kids who feel neglected rebel, so she was able to balance better with time.
So my next piece of advice is to treat your blind kid the same as your other kids. It’s instinct to protect and pay more attention to the one you think is more vulnerable. Resist that temptation. Blindness does not inherently make a kid more vulnerable. And don’t justify paying more attention to the blind kid by asking the sighted sibling to have compassion or to feel lucky that kid doesn’t have the same need. Kids just want to be loved, blind and sighted alike, and you could do real harm to the sighted sibling as well as to the relationship between the kids.
It wasn’t until I was four that I got a diagnosis—Leber’s Congenital Amaurosis (LCA). I had very thick glasses from when I was a toddler, and eventually, they became bifocals. Of course, we were poor as dirt, so they were the plastic public aid glasses. Every year, I’d get to pick out a new pair of the exact same frames in a different color. Well, in my time, there were four colors, so I cycled from red to blue to brown to purple and back. And because my mom worried so much I’d lose those precious things, I wore those glasses chains, which of course made me the most popular girl in school. #Sarcasm!
When I was four, I started preschool at the local school, and I failed. No, I mean I literally failed pre-school. At the end of the year, they gave me a test, and I was supposed to recognize an apple, an umbrella, and a house. I remember recognizing them just fine but not having the language skills to communicate their names in English. Arabic, not English, was my first language, and I did not have sufficient vocabulary for that simple test. The school staff thought it was a visual deficit that caused this, but in reality, it was the lack of English. So I failed preschool at age four because people thought I was too blind, but in reality, it was because I didn’t speak the language.
So off to a resource school for the blind I went. I repeated pre-school and was a year older than everyone in my class. I learned how to do some things non-visually, but mostly I learned how to use the vision I did have to get along. I remember watching kids in my class use canes and learning braille. Instead, I got to use large print books that the teacher’s aide had to manually color for me. I asked if I could learn braille and was told that I didn’t need it because I could see. I asked my mom to get the school to teach me braille, and she asked the school what it thought.
The school district said I didn’t need braille because I had enough vision to read print. Granted it was like font size 24, but they said print would always be better and easier. They also told my mom that if I learned braille, I’d stick out among my peers. My mother believed them because she thought they were experts in teaching blind kids whereas my mom had only one blind kid.
My next piece of advice is to make sure your kid gets braille and cane travel instruction no matter how much usable vision they have. I think about how much easier my life would have been if I’d learned braille and could travel on my own as a kid instead of as a law student. Finally, it’d be pretty obvious that I was a blind kid when I had my nose one inch away from a huge book in 24-point font, probably much more obvious than if I sat upright with my hands on the book instead.
Don’t get me wrong. I learned important and necessary skills at the resource school. Because we were largely in the mainstream classroom, I learned socialization skills with a variety of types of kids. I learned how to read, I learned English, I learned to be a kid. I also learned how to ice skate because a resource school didn’t hesitate to take blind kids along with sighted kids on field trips. I went camping and boating and all kinds of things I know now that most blind kids who go to either a school for the blind or who are 100% at their local school district don’t get to do. And through those activities, I learned self-confidence and that I could do anything a sighted kid can do. I marvel now as an adult that the very school district that had such positive attitudes about what blind kids could do also didn’t give them all braille or O&M. I also marvel that their philosophy on gaining confidence through activities that are not ordinarily open to the blind is so much like a National Federation of the Blind (NFB) training center way of thinking. We will gain confidence by doing the thing, and it is the responsibility of those of us who run these programs—whether an NFB training center or a resource school for blind kids—to create as many opportunities for “doing” as possible.
My next piece of advice is to create as many opportunities for “doing” as possible. Don’t think about whether or not you can take a family vacation that includes a particular activity. Think about what adaptations you might want to make to that activity so your blind child can fully participate.
After second grade, I returned to my neighborhood school through sixth grade. I had good times and bad times. I didn’t have a lot of friends because I was so different. Imagine the little (I was really little despite being a year older than my class) blind girl with the public aid glasses on a chain with the pigtails in the home-sewn clothes who didn’t speak a ton of English. I was the image of an outcast. And we all know kids can be quite cruel. I loved learning at school, and I loved to sing, and I had playmates in the form of my siblings and those from the Middle Eastern community where we lived. So I found plenty to do and I turned out OK despite not really having friends at school.
But the most important skill I learned was touch typing. I remember spending hours with my vision itinerant—I think we call them Teachers of the Visually Impaired now, sitting at an old school typewriter learning the home row and then in time being tested on speed and accuracy. I can now type over 80 words a minute, and it is probably the most important skill I learned as a kid.
My next piece of advice: teach your blind and sighted kids to touch type when they are really young. It will be an invaluable skill.
Meanwhile, my mom kept taking me to every doctor she could find in search of a cure. We heard about experimental therapies and retinal transplants and genetic modification and all kinds of things that weren’t available then but might be in my lifetime. Each time my mom eagerly listened to possible cures at some distant point in the future, I wondered why the way God made me wasn’t good enough. I went along with her to these appointments because it seemed she had set so much of her hope for my future in a cure, and I didn’t want to disappoint her. All the while, I didn’t feel broken, so I didn’t want to be fixed.
My next piece of advice is to focus on what your child can do—which is virtually everything—instead of finding a cure to restore their sight. When parents focus on medical cures, kids feel like they’re broken. Blindness is not an illness. It’s not fatal, and it doesn’t need to be cured in order for your child to live a great life. Don’t get me wrong, if there were a cure for LCA to restore my sight, I wouldn’t dismiss it out of hand. But most of us will never see a cure, no pun intended, in our lifetime, and focusing on cures rather than reality is so dangerous and damaging.
My mom was my champion, and she still is. She hoped in her heart for a cure and still does because it’s natural for a parent to want their child to have the easiest life possible. But my mom also had space to push me hard to be productive. She herself did not finish middle school. But she knew that education would be my sword and my insurance. So it wasn’t a question of whether I’d go to college, but rather a question of where I would go to college.
My mom also pushed my siblings academically though that wasn’t our culture. She figured out that in order for me to want to pursue education, I’d have to have good role models. So she set a standard for all of my siblings in the hopes their success would drive and motivate my own. Now, among the seven of us, we carry a combined nine bachelor’s degrees, ten Master’s degrees, and three Doctorates.
My next piece of advice is to have high expectations of your blind child and equally high expectations of your sighted child. Education can be an equalizer for those with disabilities, so if your child is so inclined, encourage them to pursue a degree.
I attended a religious parochial school for middle school and high school, and I had a great time. I made friends who had shared lived experiences with me. But I didn’t learn blindness skills other than how to order off a menu using a monocular at Taco Bell. A great skill, but not super useful in the scheme of things. I had been traumatized by being left behind in preschool, so I accelerated my learning and finished high school in three years. My high school administration didn’t think a blind person should do this, but my mom supported me.
I attended college and maneuvered it so I could live on campus. That was an amazing experience because I had to learn how to be an adult and how to be independent. Before college, my mom had ironed my clothes, made my meals, and did anything remotely visual. In college, I learned to do for myself and that I could do things for myself.
My next piece of advice is to let your blind child learn to take care of themselves. Sure, I burned shirts with the iron sometimes, and I once turned all of my socks pink because I didn’t sort properly, and my first attempts at cooking were dismal. But I survived, and hey, pink is the new black. Give your kids the space to be adults. You won’t always be there to take care of them.
I did not get the opportunity to attend an adjustment to blindness training center, and that is one of my biggest regrets. I come from a culture where children move out of their parents’ homes into their marital homes. I broke the mold by dorming, but even that was so unheard of that my family received a ton of community criticism. I was lucky to be able to learn blindness skills from other blind people, but my skills aren’t where they would be had I attended programs at an adjustment to blindness training center.
My next piece of advice is to send your child to all the adjustment to blindness training programs you can. I believe the National Federation of the Blind training centers and the structured discovery method are critical to blind individuals gaining independence and a positive attitude toward blindness.
As a parent myself—I raised my three nephews—I’ve come to understand that a parent’s greatest struggle is to both protect their child and to ensure that that child learns to be an independent functioning adult. Sometimes we get it right, and often we get it wrong. We hold them too tightly, we don’t let them try things because we are scared, and we do things for them instead of expecting them to do for themselves. The world can be a scary place, and we want to shield our children from the scary. Of course we do, that is our job as parents. But it’s also our job as parents to give our kids the skills they need to live, to join the workforce, and to move about the world.
My next piece of advice is to hold tight when it’s appropriate but let go when it is appropriate. I didn’t get to go to a training center because of cultural expectations around protection and because my parents couldn’t imagine I’d be safe out of their line of sight. That hurt me as an adult because I had to learn things by being in the world instead of in a nurturing training environment. Finally, I’ll suggest that when choosing a training center, don’t let a newspaper article or gossip and innuendo keep your kid from an incredible life-changing experience. Talk to people who went to those training centers, talk to parents who sent their kids there, go and visit to experience the place for yourself. If you aren’t sure, suspend judgment while you do your research and until all the facts are in. If we, as parents, act on incomplete or inaccurate information, we are doing our children an incredible disservice.
I went to graduate school and law school. At that point, either my mom was tired after raising seven kids or she realized that I was an adult and had to have space to live my life. I met the NFB and learned braille and how to use a long white cane. My mom struggled, of course, with wanting to protect me, but she was thrilled that I had people I could talk to who’d been through what I was going through so I didn’t have to reinvent the wheel every day.
And so my next piece of advice is to find other blind kids for your child to socialize with. And you, as parents, should find blind adults to learn from. Your blind child will learn things that will become invaluable from other blind kids. You will learn from blind adults all of the great things your child can do and become.
A few years ago, I was diagnosed with cancer and had an allergic reaction to the radiation. This resulted in my losing much of my remaining vision. I’ll be cancer-free for four years this September, God willing. But I was able to adapt to the loss of most of my usable vision because I had peer support, good blindness skills, and a positive outlook. Of course, I mourned, and my parents did too. But we realized that in the end, I had what I needed to be productive. I gained those skills and attitudes from successful and positive blind role models and peers who happen to be members in the NFB, and it made all the difference.
In my life, I’ve raised my three nephews, and thankfully, as of last year, they’re all off the payroll. Two of them had significant disabilities, though not blindness. And I made all the mistakes my parents made. Parents are human, and they do their best for their children.
My next piece of advice is to give yourself grace when you get it wrong. Kids are resilient, and they’ll get over our mistakes as their parents. You’re going to make a lot of mistakes. It’s going to be OK.
My doctoral dissertation was on the impact of parental involvement in the IEP process on outcomes for blind students. It’s been about 17 years, but the data was clear. Kids whose parents are involved in the IEP process do more than four times as well in school and at meeting their IEP goals as students whose parents are not actively involved.
My next piece of advice is to be involved in the IEP process. Be more than involved; be the helicopter parent. Be the Velcro parent. Be the barracuda parent. Your child will benefit.
Today, I manage an anti-discrimination and anti-harassment program for a federal agency. I have a staff of 35. I am a civil rights and employment attorney. I live across the country from my family, and I live on my own. I travel all over the world for fun and for work. I cook, I host parties, and I have a great life. I owe it all to God first and then to my parents, both of them. My mom did the heavy lifting, but my dad was critical to the financial support so that I could get my education. They gave me the greatest gift: their love.
My last piece of advice is to just love your kids, to tell them and to show them you love them. You can’t mess up parenting a blind child if you just love that child. You’ll figure out the rest, and when you struggle, connect with the National Organization of Parents of Blind Children, a division of the National Federation of the Blind to help you.