Story
Nai’s CVI Perspective: “Bring forth an understanding of CVI from the inside out.”
Nai shares why they started their blog, The CVI Perspective, the current misinformation about CVI, and what accessibility means.
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, 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 last article of a three-part series about Nai’s CVI perspective.
Read or listen to Part 3 of Nai’s interview, uncut. Get ready for a powerful and truth-telling story.
What were your intentions for starting your blog, The CVI Perspective?
My main intention was I wanted to highlight and bring forth the stories of people with CVI, the first-hand accounts. I wanted to bring forth an understanding from the inside out. A lot of the materials on CVI, these days—it’s good information and valuable—but it’s all from the outside in. It’s from professionals who’ve never lived with CVI. It’s from the eye doctors, researchers, and other specialists who are studying it from the outside in. I’m so grateful for what they’re bringing forth and for their work, but we need to center the experiences of people who live with CVI, who have the day-to-day experiences. So, I wanted my blog to bring forth CVI from the inside out, what it’s like to be on the inside looking out.
We need to center the experiences of people who live with CVI, who have the day-to-day experiences… I want to bring forth an understanding from the inside out.”
Another reason I want to bring forth that perspective is it guides the questions that researchers ask. An analogy is in the Autism community. A lot of the research about autism is done by people who don’t have autism. Their perspective informs the very question that they ask. For example, “How come Autistics don’t have empathy?” and then they use a theory of mind test, which includes visual processing tasks like rotating things in your mind (not CVI accessible!), to explore this question. Even the assumption that somebody who scores a certain way on the theory of mind test lacks empathy is a mistake that springs from the assessor’s bias as somebody who’s not autistic.
I’m diagnosed as Autistic and I have deep empathy for people—empathy is a huge piece of my day-to-day experience. We need autistic researchers to come in and ask different questions, which is starting to happen. Instead of saying Autistics lack empathy because they don’t make eye contact or rotate things in their head visually, now they’re asking how do autistics show empathy differently, how do autistics read cues differently that then gets interpreted by neurotypicals as lack of empathy. It’s speaking two different languages and they’re missing each other’s signals. I want to see the same thing happen with CVI, I want to continue having all the great professionals who’ve done the work that they’ve done to keep at it and bring in CVIers who can be on the team to guide and direct the research.
Since the recording of this interview, I have met one CVI researcher who has CVI, Dr. Nicola McDowell. I want to highlight and recognize her wonderful work and hope that there will be more CVI researchers with CVI following in her footsteps. If there are any other CVI researchers with CVI out there whom I have overlooked, I sincerely apologize and hope that you will reach out to me to let me know about your work as well.
If you were to ask a research question about CVI, what would be the question?
There’s a big question that I would like to see. Some people view Autism as a spectrum, but a lot of Autistics are saying they don’t really experience Autism as a spectrum. They experienced Autism more as like dials on a mixer board, where some things are up or down some days. For example, my language will be up one day or my ability to socialize will be down another day. There are so many factors changing each day. I’m curious to see if that’s true for CVIers as well because right now a lot of our understanding of CVI is the linear spectrum.
How did you cultivate the courageous leadership to write your open letter to the CVI community?
It’s funny, I’ve actually spent years waiting for this moment. I still see a lot of prejudice against CVI from Blind rehab professionals. I’ve got in cars with colleagues, listening to them make fun of CVI and say it’s fake and I’ve had to sit there and hear that kind of thing. But now the tides are finally shifting. I read Eyeless Mind by Stephanie Duesing (CVI parent), and oh my god it’s my life. So that gave me a lot of courage. I just couldn’t bear another moment of misinformation. I know people mean well, but I’m so connected to the damage of misinformation. I told myself I have to be part of the change I want to see. I feel so strongly compelled that I have to say something and have to be part of the change in spreading information, awareness, knowledge and understanding to replace misinformation, misunderstanding, ignorance, and the prejudice that comes out of those things.
I just couldn’t bear another moment of misinformation. I know people mean well, but I’m so connected to the damage of misinformation.”
What is some of the misinformation being perpetuated about CVI?
- There’s still a number of people, including blindness professionals, who talk about CVI like it’s not real.
- Brain-based visual impairments can only come from obvious trauma to the head that is visible from the MRI scan. We know that there are numerous causes of CVI, including genetic causes.
- Everybody’s CVI is going to improve. If you just push them to practice, they’ll become sighted. That’s a big one. I know that a lot of people do genuinely experience improvements and I’m not denying that. But I think the extent is often overblown and then that becomes a pressure to put on every CVIer when it’s often not our actual trajectory. And the idea that we won’t need blindness skills to be able to live as independent adults.
- There’s a lot of misinformation of how CVI manifests. CVIers are a heterogeneous population. CVI occurs with severe multiple disabilities. There are people with CVI where CVI is their only disability. Then there’s people with CVI that are like me where I have other disabilities but you can’t necessarily see it. There are so many manifestations of CVI.
What does access and accessibility mean to you?
Provide options to the person, different options, and to let them figure out what works, naturally through what they gravitate towards. With CVI that might mean offering print and offering Braille—give both options and let them decide what they prefer. Access is individual. What works for one person won’t for another. I don’t promote anyone modality and one right way of doing things. I promote presenting many different options and letting the person decide what works for them. With Deaf people, some people prefer sign language, some people prefer to have cochlear implants, and some like having both options. It doesn’t have to be this either-or approach. Just give people options, give them tools, and then let them naturally decide what works for their body, their brain, and their mind. Provide flexibility of options—be solution-oriented, a problem solver, think outside the box, and be creative.
Access is individual.”
A lot of it is also attitudinal. Respecting each person as the authority of their own way of existing is a big part of accessibility.
I’m a big fan of providing options for the whole blindness spectrum. A lot of times there’s an attitude of if you have a lot of vision, you don’t need Braille. I believe in multiple options to access reading: print, Braille, auditory. I think about things like visual fatigue and stamina. It’s one thing to read a label on a soup can and it’s another thing to read eight hours a day for work. Seeing for small parts of the day versus seeing all day are very two different things. I often will recommend Braille technology to clients who have usable vision because I’m thinking about those layers. I recommend it as an option, I’m not forcing it on them. The point is to give them options that meet their unique needs.
Is there anything else you want to share?
I want people who have CVI to feel welcome to email me your stories, whatever you want to share. It can be about something that’s already been on the blog or something new that you just want to speak from your heart. You’re more than welcome to share your stories. I want to hear from you because I don’t want this to be about me. This is about all of us working together. This is bigger than any one person. This is a whole movement. Providers and professionals, send me your questions. I’m happy to accommodate any type of submission. If typing is hard for you, if words are hard for you, I’m happy to be accommodating. You can send an audio clip, we can do a phone call, I just want your stories, and we’ll find some way to get it on the blog that works for you. I want us to have a whole anthology so that we can bring forth the understanding from the inside out.
We’re grateful for Nai’s courage to share their CVI story from the inside out and speak their truth. Nai, you are brilliant and will help change the lives of so many. Onward!
The CVI Perspective
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.
