Are You Aware? Life From My Point of View
This is part III in our Awareness Wednesday series on disability. Read the other posts in the series here.
It is 2:30 p.m. and I’m sitting on the steps in front of the school waiting for the taxi that will take me, Connie, and Billy home. I’m working on my homework, which is reading. It is fun, and I’m learning more and more. I’m recovering from my first grade year of school in the U.S., where the teacher had no clue how to teach low-vision children. I’m now in a new school and must be transported to another town.
The taxi arrives: It’s the white van and that means Ray. Ray hates children who are disabled because he gets paid less to drive them. I get in and hope I’ll be dropped off first and not last.
That was when I was 7. I was a smart kid. I knew I wasn’t safe.
That was when the sexual abuse began. Abuse wasn’t uncommon for disabled kids in the 60s. There weren’t checks and balances. A guy like Ray who felt put out by having to transport kids, rather than collect fares, was free to vent his anger on those he resented. He was a predator of the worst type.
In school, I was mainstreamed and pulled out of class for an hour each day. I’d go to the resource room, where I’d get help with assignments that needed “little blind girl” (LBG) assistance. This was when dittos were still used in the classroom, and papers were often hard to read. The staff would darken and even the printout on worksheets the other kids were doing in class.
My second year at El Rancho Verde Elementary, I was given a choice: Learn to type, or read Braille. The only advantage to Braille was being able to read in the dark. I chose to learn to type.
When I was 10, the state decided to change the way assistance was given. I went back to my original school, where a teacher would come in twice per week to work with me. By the end of sixth grade, the large-type texts were gone, because publishers and printers couldn’t justify printing just the one for me. The teacher for the visually impaired would have continued to come, but I couldn’t see the point. She wasn’t going to read the smaller text to me. What was the use? I told the powers-that-be to stop. They did.
This was during the time when there were no IEPs. The rule of the education jungle was that if it was out of the ordinary, you didn’t get it. If you needed more time to take the test, you got it. If you needed someone to read the questions to you, you got it. If it was determined that you could read (and I could devour books), you didn’t get any special assistance. I was, from the 7th grade on, on my own.
In the eighth grade, when we were registering for high school, I told school staff I would do the next four years in three. I’d been forced to repeat the first grade due to the poor teacher I’d had. I was getting out of this racket on schedule.
Here’s how the conversation went with my parents and the school administrator.
Admin: Your daughter says she wants to graduate in three years. We don’t think she understands what she’s doing.
Parents: If she says she’s going to graduate in three years, you had better make it work for her.
I smoked it in two and a half years.
When it comes to my disability, I have been underestimated, undermined, bullied, abused, passed over. Society has wanted me erased. I’m a reminder of what can go wrong after conception.
I was conceived during a pandemic of another sort. 1958. There was no vaccine for rubella, and my mother had such a light case that her OB/GYN didn’t concern herself much about it. At my birth, they knew instantly that I had cataracts. They sent me home with my parents, and six weeks later when my parents noticed that my eyes weren’t tracking properly, my mother bundled me up and took me in for an appointment. Alone, with me, she got the news. The cataracts were operable, and so was the heart defect. Was I deaf? Was I developmentally delayed? Those answers would come at a later time. That was one bad day for my mother! Despite being told by her OB/GYN that it wasn’t her fault, she carried the guilt for her entire life.
The problem with being a kid with any disability is that you get short-changed on normal life experiences and pay too high a price for the unhealthy ones that aren’t normal.
I was labeled as learning-disabled and seen as slow, rather than highly intelligent. I wasn’t allowed to get into the courses I longed for. I had acquaintances and no friends. I thought it was me. It wasn’t me at all. It was society.
The one place that should have been a safe social haven was church. It wasn’t. When I was 10, during a weekday primary class, the trouble began. I was passed a note from the other girls in the class. The note said simply that they hated me. I sat through the class, and at the end left in tears.
Even at 10, I knew it was others’ and not my issue. My mother hurt for me. This was all complicated by the fact that my father was the stake president. My father made a choice, as a leader, to not come down on the parents of the girls who were bullying me.
I wasn’t invited to the parties, the dances were painful, and these girls took their dislike of me to school. If I made a friend or showed an inkling of doing so… poof! That friend suddenly stopped speaking to me. By high school I stopped trying. I negotiated Sunday-only church attendance with my parents and settled into being cautious in school (and getting out of there fast).
I thought Ricks College would be better: It wasn’t. Depressed and alone, I returned to California, found a wonderful state university, and tried to blend into the local ward. That didn’t work. I was a young adult and away from family. The message was clear: You aren’t wanted here.
In my early 30s I applied to grad school, got my master’s in clinical psychology, and planned to work with families who had a disabled family member. I would work with the children and parents. This would open up a new world for me. In spite of all these achievements, it took meeting my husband to really change how I thought about myself.
We dated for four years, married, and promptly moved to Europe. It wasn’t until well into our marriage that he began to say to me, “I wish I could see what you see.” In 2012, as I was doing a vision rehabilitation program here in the Netherlands, he got his wish. He was given a pair of glasses that were designed to simulate what I saw. He put them on. The right eye was blurred out so that he couldn’t use it. The left eye had a tiny square where I had central vision.
He began to walk. “Gail! Give me your arm!” I gave him my arm, and we walked to the computer lab. By this time he was sick, and he removed the glasses. “This is what you live with daily?! Oh, Gail.”
When I got home that Friday, Jon greeted me differently. His wish being granted was essential to his understanding of me. It changed things in a big way. He began to stop videos and point things out. Our large white wall made a great movie screen, and we had a projector instead of a TV. Having someone who loved me and really tried to understand made all the difference in my life.
Now on my own — again — at 60, I’m settled and in a country that supports the disabled in a way that would never happen in the U.S. I’ll stay here because of this. Here I’m able to be self-sufficient in ways that I can’t be in the U.S. It shouldn’t be that way.
Let me tell you about how programs like the vision rehab center work here in the Netherlands. I was there for 15 months. I had a visit with my ophthalmologist at a specialized “eye hospital” in Rotterdam. I told him about an incident I’d had where I had to walk home alone in the dark. I left his office with a telephone number to have an intake done at the residential vision rehab center. The program, run by Visio, was known as the Loo Erf. I went in for a five-day evaluation. It was determined that I’d most likely do a five-day-a-week live-in at the treatment center for the first five or six months. After the initial five or six months we’d do a review. During this time I learned how to walk safely using my cane, clean my bathroom more effectively, and do other housekeeping chores without the use of my eyes. I learned where to sit in a room so that I could make the most use of what vision I had left. (I have only 12% of my vision left.) I was also enrolled in Dutch lessons that were geared for the visually impaired.
I was charged a monthly co-pay for these services. It wasn’t much. Health insurance is required to provide assistive devices that are reasonable. Even my transportation by taxi was covered by health insurance. But, even with great insurance, everything I need hasn’t been covered. I purchased my 27-inch iMac myself, as the insurance considered it a luxury I could have done without. I could afford to do this, even though the insurance thought I could get by with a smaller 19-inch screen with a software package that read things for me. For the disabled, Macs rock.
The other difference here in Europe is that I can get around on public transportation. It takes a wee bit longer, but I can get most anywhere I need to go!
My sister, who is now also a person with low vision, has been envious. The most she got were some “lessons” via the California State Department of Rehabilitation. I was able to come to terms with what vision I had left. I had sessions with a psychologist. My sister refuses to use her cane.
I want to make a plea to all who read this: The only way the disabled will be treated better is if it starts in homes. Parents need to inform themselves — and then teach their children — about the other children who are in the classroom who may be different. This requires more than singing “I’ll Walk With You.” This is about living it, doing it, learning to find out what to say to the blind, the deaf, the autistic, the learning challenged, the deeply shy child, or the “misfit.” This is about teaching the children to be compassionate. This is about teaching children to look at themselves honestly. It is about self-acceptance and empathy.
Only then will the bullying stop. Only then will we, as a society, begin to become inclusive of everyone. This is how we break down the “us versus them” mentality that is so prevalent.
This is why, at 60, I still advocate for the disabled. I have hope for the younger children — my great-nieces and -nephews. I hope my great-nephew, who is autistic, will have it better than it was for me.
Gail Nicolaysen-Shurtleff is an expatriate living in the Netherlands. She obtained her BA in psychology from Sonoma State University. After serving a full-time mission for her church, she pursued a master’s in clinical psychology. The nontraditional graduate program allowed her to follow several of her clinical dreams. She received her master’s in 1994 from JFKU. She holds an MFT license in California and is also registered on the National Institute of Psychologists (NIP) in the Netherlands. She now sees clients online and provides therapy and coaching services worldwide. She does grief, loss, and life transition work, as well as consulting for families where there is a bipolar person in the mix. Her passions: disability and suicide prevention. She is a moderator for Mormon Women for Ethical Government’s Facebook discussion group.
