Nai is the creator of The CVI Perspective, a CVIer (Nai’s term), and works for the National DeafBlind Equipment Distribution Program. Nai spoke with Rachel Bennett, Assistant Director of CVI Now, about their story of what it took to pass as sighted when no one understood CVI or allowed them to be visually impaired, how they came to find the confidence to accept their disability and whole self, and be part of the change they want to see in the CVI community. This is the second article of a three-part series about Nai’s CVI perspective.
Read Part 2 of the interview below and/or listen to the uncut audio version. Get ready for a powerful and truth-telling story.
In vision therapy, they worked a lot on visual memory. It was really hard for me to remember something visually—it was hopeless. I used three modalities to process the visual world: semantic processing, language, and phonetics to remember a visual target. If I tried to remember a shape, I couldn’t hold on to it and keep it in my head—it would just slip away. But if I thought of a circle as the letter o, a triangle as the Greek letter Δ (delta), or a square as the Chinese character, 口 (kǒu), meaning mouth, I could hold on to those. And then when they asked me to regurgitate the shapes, I would convert that into the sound of the letter or character: “oh” for “o”, “the” for Δ, and “kǒu” for 口. When these three shapes were presented, I would think “oh-the-kǒu” and translate that to help me identify the shape. I use semantic language phonetics to process visual recognition. I had to pass as sighted, so I found these workarounds to create this illusion that I was doing things the same way other people were doing them.
Language has always come very naturally. I love languages. I went to a bilingual school, studied languages in school, and had the opportunity to go study languages abroad. I went back and visited my orphanage so I learned Russian. At that time, I was thinking I might try to find my birth parents and I wanted to be able to talk to them directly. I had a neighbor who was Iranian and she started teaching me Farsi. I had some friends from Brazil and I love bossa nova, so I learned some Portuguese. I just love languages and I could eat them up. Languages were my workaround for seeing; my life hack.
I did a lot of writing on myself to learn how to write because feeling it on my body, and then feeling my hands moving is what helped me learn writing. Again, when I was in that window where nobody understood I was visually impaired, I would get in so much trouble for poor handwriting; for not looping my o’s and not staying on the line. I would get in serious trouble because the school was pretty strict and really valued penmanship. So, I kind of developed this habit of compulsively writing on my own body. I usually do it on my thighs.
I also started just compulsively translating languages, which really helped me solidify writing. I learned writing systems through tactile. When learning Mandarin Chinese, my teacher would write characters really big on the page, and then she would trace them for me because the stroke order in Chinese is very important in order to write the characters properly. So, I would really remember them as the stroke order and I can still remember characters by the feel of the stroke order. It’s funny I don’t even really remember what they look like, but I just remember the feeling of writing them. And then I can reproduce them that way.
I would remember routes from the way somebody had drawn it on my back… Because I could remember the map in my body, I could hold on to it and keep it in my memory.
Then there’s tactile sign language that is very kinesthetic—your body’s moving and your feeling different parts of your hands. ProTactile, which is used by the DeafBlind community, involves your body a lot. This involves a lot of mapping on the back, shoulders and arms. If you’re sitting, it’s on your thighs. Learning ProTactile ASL improved my O&M skills significantly because it took something I’m good at—language and kinesthetic—and married it to spatial in a way that I could feel certain nerve networks in my brain connecting. It was like brain rehab therapy, being able to think in these new ways that I have never been able to before. I would remember routes from the way somebody had drawn it on my back. I would remember where they touched me on the spine, the muscle between my spine, my shoulder blades, and my trapezius muscle. Because I could remember the map in my body, I could hold on to it and keep it in my memory. Before that, trying to hold on to spatial-visual things was just a total disaster. I would get so lost. With ProTactile ASL, my navigation got so much better. I walked to school five miles every day, remembering the route and that something I never would have been able to do before ProTactile. It really helped rewire certain connections because it brought language and space together. I couldn’t start seeing through my eyeballs better, but all those hidden processes of visualizing got better with ProTactile.
I did terribly in any classes that required a lot of reading. In English and History, the teachers assigned 50 pages per night. I just didn’t have the steam in my engine. And when I did try to read it, I had zero reading comprehension whatsoever. By the time I got to the bottom of the page, I didn’t know what the top said. I wouldn’t even know what the previous sentence said. I was spending so much time just trying to see the letters. I didn’t have any brain space left for tracking the story or following what’s happening in the text. The next day we’d have the reading comprehension quiz and my average grade was literally 10%. And you know because my teachers saw me excelling at languages, they took smart plus failing again and thought I just wasn’t trying hard enough or applying myself. Eventually, my teachers allowed me to write essays and that pulled my grade up.
I was spending so much time just trying to see the letters. I didn’t have any brain space left for tracking the story or following what’s happening in the text.
For math, my problem was I would miss a lot of the signs, like the negative sign and other symbols. I would misread the problems and then get the wrong answer. With languages there’s more context, if you don’t see one letter correctly in a word, you can at least use the context to fill in the gaps. With math, there’s no context to tell you that 48 is really negative 48. Each character matters and you can’t use the context to fill in gaps. So, my misreading things became even more obvious in math settings. I did pretty terribly in math, but I think my teachers kind of caught wind of it.
With math, there’s no context to tell you that 48 is really negative 48. Each character matters and you can’t use the context to fill in gaps.
I actually had one teacher who had a brain injury. She had an intuitive understanding of neurological disability because she had it, we even talked openly about one. She noticed my vision was getting worse. She actually had CVI—she had a partial vision loss from her brain tumor. Again, it’s another situation where she may not have known the word CVI, but if you look at the whole picture, she had a CVI, in addition to her sound sensitivity. She knew how to really get that information to me in a way that made sense. I actually did well in her class. I did disclose to her I was having vision struggles, which I kept very private.
My family was still in denial. The overall school culture was very ashamed of disability. I didn’t have any culture or pride or even a sense of self-acceptance in being visually impaired. It was just a shameful thing that you’re supposed to hide and keep a secret. And that’s very common; a lot of places still view being disabled as a negative thing and it’s a source of shame. That’s the culture I grew up in. I’m not trying to point fingers at any one person, it’s the whole system.
So many internal battles. When nobody understands you, not even eye doctors, and nobody believes you, so everybody around you is gaslighting you, you start to doubt yourself. I spent a lot of years even doubting my own visual impairment and asking myself, “What’s wrong with me? Why can’t I just stop being like this?” I gaslighted myself too. There’s a lot of layers because when somebody is thought to be faking their disability, there’s a lot of other assumptions that come with that like, “oh you’re just this horrible person.” So, I had my whole character branded because of not being diagnosed. I started to think I’m this horrible person and I didn’t even deserve to live. I spent so many years really believing I was just this terrible person because I didn’t understand that I had a real disability.
When nobody understands you, not even eye doctors, and nobody believes you, so everybody around you is gaslighting you, you start to doubt yourself.
It took a lot of years to slowly shave away that deep shame and self-hatred and feeling completely worthless. I had the worst of both sides. On the one hand, I was under all this pressure to pass as sighted, so I had to get good at that, and then that was used as more evidence against me. I couldn’t win either way. There was nowhere left to go. And so the only place left was continually having these experiences where I just couldn’t deny my own reality anymore. I just had to start believing myself. I had to be ground zero for myself.
“I just had to start believing myself. I had to be ground zero for myself.
I did have glimpses of other people who saw the truth. I had a friend whose brother was legally blind and his mother could tell that I was clearly not like a typical sighted functioning child and she offered to start enlarging the text in all my textbooks to a larger size. That made a huge difference for me. There were tiny little glimpses here and there of people who saw the truth.
The truth kept hitting me in the face to the point I couldn’t deny it. I came so close to being hit by a truck, like within an inch. Then on a hot day, I was uncomfortable and tired, and my vision just went out. So, I started having no choice but to realize that most people don’t experience this. Sighted people can walk on a hot day and not have their vision go out.
I started having no choice but to realize that most people don’t experience this. Sighted people can walk on a hot day and not have their vision go out.
Qualifying for blindness services after my concussion finally brought some validation and recognition of my reality. There was meeting other CVIers and connecting on so many of our experiences. I started reading textbooks, taking classes, and webinars and it was just like, “oh my god like all these things are explained in my life.”
I experienced overt physical and sexual abuse. That woke me up to all the covert forms of abuse, the effects of psychological, emotional and verbal abuse, and how much those are just as real and just as harmful and damaging, and yet they can be so much more pernicious. It’s a lot harder to get support for those because people understood the black eye or a broken bone or bruising they saw on me.
When you don’t even have the medical system to support your reality, that gives permission to everybody around you to not support you. I know people aren’t trying to be mean or cruel, they’re really just ignorant, but the effects are the same and the end result on the person psychologically is still the same. That’s why diagnosis is so important. The effects of not being diagnosed or misdiagnosed amount to abuse even when nobody’s trying to be malicious or harmful, but just not knowing can be so damaging and can cause so much suffering. That’s why I want to bring forth knowledge and awareness to prevent unnecessary suffering for every other current and future person with CVI.
Learn more from Nai at The CVI Perspective. Centering the stories of individuals with CVI is essential in building our CVI community and moving the field forward. Nai wants people who have CVI to feel welcome to email your stories—whatever you want to share to [email protected] And if typing is hard for you, if words are hard for you, Nai is happy to accommodate.
I want us to have a whole anthology of stories from CVIers, so that we can bring forth the understanding from the inside out.Nai, The CVI Perpective
Read on to Part 3 of Nai’s incredible, truth-telling interview with CVI Now.