American Action Fund for Blind Children and Adults
Future Reflections
       Convention 2021      NOPBC CONFERENCE

(back) (contents) (next)

Living the Life I Want: Because of Parental Empowerment

by Ronza Othman

Ronza OthmanIntroduction by Carlton Walker: Ronza Othman has many wonderful credentials. She works for the US Department of Health and Human Services, and she serves as president of the National Federation of the Blind of Maryland. She is brilliant, and she is so much more. She is kind, she is thoughtful, and she is giving. She does not hesitate to give to our children, to parents, and to blind adults. We are honored to have Ronza give our keynote address this year.

Good afternoon, everyone! I'm 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. Then I realized that I should share what I wished my parents knew when they learned that their child was blind and as they raised me. First I'd like to tell you a bit about myself. Understanding my story might help you contextualize some of the things I will share with you.

How It All Began

I'm the sixth of seven children, and I was born within a few weeks of my parents emigrating to the United States from a third world country. We are Palestinian refugees. Our family was displaced twice between 1945 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 would have had to stay in war-torn Palestine, and there's 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. Since then I've never been on time, let alone early!

My parents were happy they had a healthy baby, though they had hoped for a second boy instead of a fifth girl. They got over it pretty quickly, and I became my dad's favorite toy. My older brother decided to pretend I was a boy, and things were right again in his nine-year-old heart. I walked and talked and got into trouble just as all toddlers do. But when I was fourteen months old, my uncle, who was in medical school, noticed that my eyes danced. He did that thing 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, but she resisted, as any mom of six kids under the age of ten probably would. He insisted, and finally she took me to the pediatrician. Thus began a life of invasive, often painful tests, procedures, and other 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 things, and I recognized faces from a reasonable distance.

No Guilt, No Fear

The discovery that I was blind changed my relationship with both of my parents. My father had no idea how to deal with a disabled kid. He became awkward around me, and ultimately, he didn't include me in things. I remember an incident when I was five or six, and he took my older sister and my younger brother out for ice cream, but he refused to take me. He told me it would be too dangerous. We had a strained relationship for most of my life. It wasn't until I was an adult that I came to understand that his lack of interest in me came from fear, guilt, and grief, and not from lack of love. We worked hard to establish a relationship when I was in my thirties, and we are now very close.

So my first piece of advice is not to fear your child or their blindness or to feel guilty about it. Your child will think you are burdened by them, ashamed of them, and don't love them.

Just Like the Others

My mother made me her project. She took me with her everywhere. The other kids took turns going with her on errands and visiting friends, but every trip was my turn. She spoiled me rotten. While my siblings loved me, they sometimes felt they didn't get enough of her attention. Kids don't care if adults feel sorry for kids with disabilities, or if adults think that kids with disabilities need a little more attention. They feel hurt and neglected because they don't view disability in the same way. My mother figured out that 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 way you treat the others. It's instinct to protect and pay more attention to the one you think is most vulnerable. Resist that temptation! Blindness does not inherently make a kid more vulnerable! Don't justify paying more attention to the blind kid by asking the sighted siblings to have compassion or to feel lucky they don't have the same need. Kids just want to be loved, blind and sighted alike. You can do real harm to the sighted siblings as well as to the relationships between the kids if you play favorites.

Rough Beginnings

It wasn't until I was four that I got a diagnosis: Leber congenital amaurosis, or LCA. I wore very thick glasses from the time I was a toddler, and eventually they became bifocals. We were poor as dirt, so I wore the plastic public-aid glasses. Every year I'd get to pick out a new pair, the same frames in a different color. There were four color options, so I cycled from red to blue to brown to purple and back again. Because my mom worried so much that I'd lose those precious glasses, I had to wear glasses chains, which of course made me the most popular girl in school! [Hashtag, sarcasm!]

When I was four I started preschool at the local public school, and I failed. I literally failed preschool! At the end of the year, they gave me a test. I was supposed to recognize an apple, an umbrella, and a house. I recognized them just fine, but I didn't have the language skills to communicate their names in English. Arabic was my first language. I did not have the English vocabulary for that simple test. The school staff thought my vision deficit caused the problem, but really it was my lack of English comprehension. I failed preschool at age four because people thought I was too blind to succeed, while in reality I failed because I didn't speak the language.

Off I went to a resource school for the blind. I repeated preschool, and I was a year older than everyone else in my class. I learned to do some things nonvisually, but mostly I learned to use the vision I did have to get along. I remember watching kids in my class use canes and learn Braille. Instead I used large-print books that the teacher's aide manually colored for me, because when you blow up textbooks there are just black and white outlines. I asked if I could learn Braille, and they told me I didn't need it because I could see.

I asked my mom to get the school to teach me Braille. The school district told her I didn't need Braille because I had enough vision to read print. Granted it was font size 24, but they said print would always be better and easier. They also told my mom that if I learned Braille, I would stick out among my peers. My mother believed them. She thought they were experts on teaching blind kids.

My next piece of advice is to make sure your kid gets Braille and cane instruction, no matter how much usable vision they have. My life would have been so much easier had I learned Braille and cane travel as a kid instead of learning on my own as a law student! The school district is going to recommend whatever is easiest for the school district, which is not necessarily what is best for your child. It was pretty obvious that I was a blind kid when I read with my nose an inch away from a huge textbook in 24-point font. My blindness was probably much more obvious than it would have been if I sat upright with my hands on a Braille page.

Get Out and Do Things!

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 to socialize with a variety of kids. I learned to read. I learned English. I learned to ice skate because the resource school didn't hesitate to take blind kids along with sighted kids on field trips. I went camping and boating and did all kinds of fun things. Many kids who go to residential schools or who are fully mainstreamed don't get the chance to do these things. Through those activities I gained self-confidence. I learned I could do anything a sighted kid could do.

I marvel now that the very school district that had such positive attitudes about what blind kids could do also didn't teach me Braille or cane travel. Their philosophy on helping students gain confidence through activities that are not ordinarily open to the blind is so much like the way of thinking at our NFB training centers. We gain confidence by doing things.

My next piece of advice is to create as many opportunities for doing as possible. Don't think about whether you can take a vacation that includes a particular activity. Think about what adaptations you might make to that activity so that your blind child can fully participate.

Keys to Success

After second grade I returned to my neighborhood school through sixth grade. I had good times and bad times, but I didn't have a lot of friends because I was so different. I was very small for my age, despite being a year older than my classmates. I was the really little blind girl with the public-aid glasses on a chain. I had pigtails and home-sewn clothes, and I didn't speak a lot of English. I was the image of an outcast, and we all know that kids can be quite cruel.

I loved learning at school, though, and I loved to sing. I had playmates among my siblings and in the Middle Eastern community where we lived. I found plenty to do, and I turned out okay, despite not having friends at school.

The most important skill I learned at school was touch typing. I remember spending hours with my vision itinerant (I think now we call them teachers of the visually impaired or teachers of blind students), sitting at an old-school typewriter, learning the home row. After a while I was tested on speed and accuracy. I can now type more than eighty words a minute. Typing is probably the most important skill I learned as a kid.

My next piece of advice is to teach your blind and sighted kids to touch type when they are young. Typing will be an invaluable skill.

Chasing the Cure

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 interventions and all kinds of things that weren't available then but might be someday. Each time my mom heard about a possible cure at some point in the future, I wondered why the way God made me wasn't good enough. I went along with her to the appointments because she had set so much hope for my future upon a cure. I didn't want to disappoint her, but 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 have a great life.

Don't get me wrong—if there were a cure for LCA, I wouldn't dismiss it out of hand. But most of us will never see a cure (no pun intended!) in our lifetime. Focusing on cures rather than on reality is dangerous and damaging.

Great Expectations

My mom was my champion, and she still is. She still hopes in her heart for a cure. It's natural for a parent to want their child to have the easiest life possible. But my mom also pushed me hard to be productive. She herself did not finish middle school, but she knew that education would be my sword and my insurance. It wasn't a question of whether I'd go to college, but where I would go. My mom also pushed my siblings academically, though that wasn't part of our culture. She figured out that in order for me to want to pursue education, I'd have to have good role models. She set a standard for all of my siblings in the hope that their successes would drive and motivate my own. Today among the seven of us we carry nine bachelors degrees, ten masters degrees, and three doctorates.

My next piece of advice is to have high expectations for your blind child and equally high expectations for your sighted children. Education can be an equalizer for those with disabilities. If your child is so inclined, encourage them to pursue a degree.

Burned Shirts and Pink Socks

I attended a religious parochial school for middle school and high school, and I had a great time. I made friends who shared my lived experience, but I didn't learn blindness skills other than how to order off a menu using a monocular at Taco Bell. That's 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 did not think a blind student should do this, but my mom supported me. By now she had learned that schools did not always make decisions based on what the student needed. They sometimes made decisions that were in the best interest of the school itself.

I attended college and maneuvered things so I could live on campus. That was an amazing experience! I had to learn to be an adult, to be independent. Before college my mom ironed my clothes, made my meals, and did anything that she assumed was remotely visual. In college I learned to do for myself.

My next piece of advice is to let your blind child take care of themselves. Sure, I burned shirts with the iron sometimes. Once I turned all my socks pink because I didn't sort them properly. My first attempts at cooking were dismal. But I survived, and, hey, pink is the new black!

Every Chance You Get

Give your kids the space to adult. 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 greatest regrets. I come from a culture where children move out of their parents' house into their marital house. I broke the mold by dorming. Even that was so unheard of that my family received a ton of community criticism. I was lucky to learn blindness skills from other blind people, but my skills are not where they would have been had I attended an NFB training center.

My next advice is to send your child to all the adjustment-to-blindness training programs you can. NFB does it best. Send your kids to the tween programs; send them to the transition programs; and when the time comes, send them to an adult transition training program. I believe the NFB training programs and the structured discovery model are critical to blind individuals for gaining independence and a positive attitude on blindness.

Hold Tight and Let Go

As a parent myself (I raised my three nephews), I understand that a parent's greatest struggle is to protect their child and to ensure that that child becomes an independent, functioning adult. Sometimes we get it right, and often we get it wrong. We hold on too tightly; we don't let them try things because we're scared; 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. That's our job as parents! But it's also our job to give our children the skills they need to live, to join the workforce, and to move about in the world.

My next piece of advice is to hold tight when it's appropriate and to let go when it's appropriate to let go. I didn't get to go to a training center due to cultural expectations around protection. My parents couldn't imagine that 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 suggest that when choosing a training center, don't let a newspaper article or gossip and innuendo keep your kid from having an incredible life-changing experience. Talk to people who went to those training centers. Talk to parents who sent their kids there. Visit to experience the place for yourself. Suspend judgment while you do the research. Wait until all the facts are in. If we, as parents, act on incomplete or inaccurate information, we do our children an incredible disservice.

Finding Community

I went on 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. Heck, I learned that I should use a long white cane! Of course my mom struggled 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.

My next piece of advice is to find other blind kids for your child to socialize with. As parents you should find blind adults to learn from. Your blind child will learn invaluable things from other kids. You will learn all of the great things your child can do and become as an adult.

A Bit of Grace

A few years ago I was diagnosed with cancer, and I had an allergic reaction to the radiation treatments. As a result, I lost much of my remaining vision. I'll be cancer free for four years this September, God willing. 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 in order to be productive. I gained those skills and attitudes from the NFB, and it made all the difference!

I've raised my three nephews, and thankfully, as of last year, they're all off the payroll. Two of them have significant disabilities, though not blindness. I made all of 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. You're going to make a lot of mistakes. It's going to be okay.

Barracuda Parents

For my doctoral dissertation I studied the impact of parental involvement in the IEP process for blind students. It's been seventeen years now, 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 get involved in the IEP process. Be more than involved! Be the helicopter 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 thirty-five. 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. My parents gave me the greatest gift, their love.

My last piece of advice is to just love your kids. Tell them and 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, we in the National Federation of the Blind are here to help you. Thank you very much!

(back) (contents) (next)