From access, to empowerment and recognition, explore the powerful insights and experiences shared by CVIers at our 2024 CVI Conference.

Amplifying the lived experiences of CVIers centers everything we do at Perkins. Our 2024 CVI conference, “Building Meaningful Recognition,” united those voices: CVIers Dagbjört ​​Andrésdóttir, Tina Zhu Xi Caruso, Nai, and Nicola McDowell joined us for a candid panel discussion about supporting access and recognition.

Here is CVI, lived, in their own words.

“Empowerment, to me, is knowledge and power. Power is knowledge. I feel empowered to take control of my life and to make decisions to improve my own life.” – Nicola McDowell

“The CVI community has empowered me to use Instagram to advocate and share my story.” -Tina Zhu Xi Caruso

Empowerment is the knowledge that I have a condition that’s getting to be known: There is a name for my condition. There is nothing wrong with me as a person. Knowing I can do something to make my life a little easier and that I can meet people in similar positions: That is empowerment.

-Dagbjört Andrésdóttir

“I’d like to see more focus on communities that are underprivileged and underserved. Throughout my CVI journey, I’ve met so many parents who are white. They have the privilege of getting a diagnosis because, if health insurance says, ‘No,’ they still can pay. I was a transracial adoptee from China. I was an orphan for 11 months. I don’t know if it contributed to my CVI, but I know that underprivileged communities and immigrants have malnutrition and other health conditions. I feel like we’re missing a huge population of CVIers like me because there aren’t any resources for us.” -Tina Zhu Xi Caruso

“Access is a human right.” -Nicola McDowell

“I was diagnosed at 19. Doctors thought my issues were due to other disabilities similar to CVI. Now I realize that maybe it was all CVI: People don’t realize how it manifests.” -Tina Zhu Xi Caruso

It might seem so simple and basic, but when you’ve had years of gaslighting, it’s powerful to have validation that your experience is real.

-Nai

“For most of my life, I didn’t have an understanding of CVI. I was diagnosed at 18. But it wasn’t until I started seeing emails from Perkins in my inbox about CVI workshops and I took a CVI course, and read “Vision and the Brain” that I was like: ‘This is my life!’” -Nai

“The stress that comes from having a visual issue can be debilitating at times: high anxiety, high stress. I have learned emotional regulation strategies to calm myself down to get out of fight-or-flight. When I’m feeling really overwhelmed and it’s a very busy environment, I simply shut my eyes. I practice mindfulness every day. I use my Headspace app.” -Nicola McDowell

CVI is a lot more than a visual impairment. It’s a whole-body thing.

-Tina Zhu Xi Caruso

“I usually describe my CVI as the book “Where’s Waldo?” Remember trying to find Waldo? I’m trying to look for stuff 24/7, all the time, every day.” -Dagbjört Andrésdóttir

“CVI is a full-body experience. Your brain isn’t an isolated organ: It’s deeply attached to every other function in your body. Sometimes, I just have to go lay down and be horizontal so that my brain can work. I take sensory breaks.” -Nai

“I have a theory: Regular people have 20 ‘spoons.’ With CVI,  you might wake up with 10  spoons. Then, you have to figure out what tasks you need to do. Taking public transportation might be three-and-a-half spoons, depending on how many times you transfer. Getting washed up and dressed: That’s about two spoons. You get to school and have a lecture, and that’s another five spoons.. You still have to get home; you still have to do things. By the end of the day, you have zero spoons.” -Tina Zhu Xi Caruso

We suffer headaches, we suffer from nausea, we struggle in the heat. But if you look at the medical information about CVI, it’s not there: It’s a visual condition. In reality, we are experiencing full-body medical issues related to CVI. I think that’s massive: Living with high stress, high cortisol has a long-term impact with significant health issues. That’s something that has not been explored—and actually needs to be.

-Nicola McDowell

Want to share your own experiences living with CVI? We want to hear from you. Reach out by clicking the ‘Contact us’ button below.

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Let’s learn and support each other on this journey. Have questions? Reach out to the CVI team at Perkins today!