Written by: Rachel Bennett
Download the video transcript.
Learn about the varied experiences of CVI from the viewpoint of a panel of adults with CVI. Some panel members have had CVI since early childhood, while others acquired it later in life. Giving voice to the differences across their life experiences can provide perspective on what it’s like to live with CVI into adulthood. As you listen to their stories, we hope this first-hand experiential information about CVI can deepen everyone’s understanding of the condition and its many effects.
The panel evolved from a discussion group of adults who have CVI, sponsored by the Smith-Kettlewell Eye Research Institute in San Francisco under the auspices of their SeeLab Group, directed by Dr. Arvind Chandna.
The discussion is hosted by Dr. Amanda Lueck, Professor Emerita of Special Education at San Francisco State University and Dr. Nicola McDowell, lecturer and researcher in Blind and Low Vision education at Massey University in New Zealand and also an adult with CVI. Panelists include Nai and Christina Roma from the United States and Dijana and Rafael from Australia.
Each panelist used a 3, 2, 1 framework to share their experiences—three strategies they use that significantly help them in relation to their CVI, two areas related to their CVI that they are still trying to figure out, and one important message for practitioners working with children or adults with CVI. Below are some of the responses from the panel discussion.
Strategies that significantly help with my CVI
- Avoid busy, crowded, and noisy places: “I shop online or when I have to physically go shopping, I go late at night or early in the morning.” -Dijana
- White cane: “I want to give a huge shout-out to my white cane, which allows me to travel independently beyond what I ever could have before when I was trying to rely on visual techniques. It gives me tactile information and kinesthetic information. Before, I used to get lost just one block of trying to take a left or right, and with my white cane, I’ve been able to walk routes as long as 5 miles or 10 miles.” -Nai
- Virtually drop landmarks every 5 meters: “I named this the Hansel and Gretel method. Whenever I’m going around, I virtually drop landmarks every 5 meters. I focus on one salient landmark nearest to me, walk around 5 meters, turn my head to trace my steps, and then move on to find another landmark. I then connect all the landmarks I have found and create a map in my mind.” -Rafael
- Trip preview or simulation before I go to any unfamiliar place: “I call this the Zoom method. This may be time-consuming, but it saves me a lot of time, and it saves me from experiencing a CVI meltdown. I use Google Maps to check my destination and see its bird’s eye view first. I then drop a pin to see my destination in street view. I then turn my cursor around at a 360-degree angle to spot any landmarks that stand out to me. This is to screen out all the clutter and focus my attention on any landmarks that are useful for my orientation. I Zoom out back to the map and repeat the process.” -Rafael
- Map out categories and floor plan of the supermarket: “I find shopping, in general, particularly in a supermarket, very stressful, very overwhelming. Once I have established my mental map of the store, I then have to map out where the items I need are located within that category. And this can be very overwhelming when I find myself staring at a very large, long, and tall supermarket shelf that resembles the colors of Joseph and the Amazing Technicolor Dreamcoat, making it impossible to see the different shapes, colors, and writing of each product, not to mention what the product is.” -Dijana
- Declutter and group items together in my home: “I work very hard to declutter my environment. It is easier to find things in my home, especially in the pantry. I find grouping items together and placing them in plastic containers in my pantry easier to manage. This way, I have mapped out where the items in my pantry are, and this spares me some visual processing energy.” -Dijana
- Braille for reading and writing: “I am entirely Braille dependent for reading and writing. I am at a point where I wouldn’t be able to access print anyway. Still, I do wish I had had Braille when I had the perfect acuity to technically see print because it was such a demand cognitively on my brain to try to understand it that it usurped all cognitive ability to do anything else, such as following the content of what I’m reading… it’s such a game changer now to have Braille technology and hard copy Braille” -Nai
- Visual breaks: “I’m learning to take breaks and close my eyes. Using my vision takes a lot of energy. It will help a lot as I learn blindness skills and how to control devices not using my vision, so I’m not exhausted at the end of the day.” -Christina Roma
Areas I’m still trying to figure out about my CVI
- My CVI as a whole: “I have not had the necessary intervention to help me understand my CVI and how it affects my mental, emotional, and physical being. Interventions, when I was a child, could have assisted me in developing strategies that could have better helped me manage day-to-day activities and gain meaningful employment. I have become accustomed to not realizing what strategies I use to compensate for my CVI as I perform these strategies unconsciously and automatically. I have struggled with CVI, without any support, for all of my life up until recently.” -Dijana
- Building and maintaining social relationships: “I have not had any close friendships because it has always been difficult for me to fit into social settings, mainly because people who don’t have CVI don’t really know what it’s actually like, to actually experience it… Now that I am more aware of my CVI identity, I am not afraid to share my own experiences with others.” -Rafael
- Learning about my needs in social situations: “Social settings such as parties or functions are challenging for me because there is so much clutter at every corner everywhere I go. Having group conversations in these settings is twice as challenging for me as I can only focus my attention on one person at a time. Having multiple conversations taking place simultaneously creates extra clutter, overwhelming my brain.” -Rafael
- Finding a way to gather spatial information: “It turns into spaghetti in my head, and I can’t keep track of what was where and the relationships between salient objects. Even when I run my fingers over the tactile, it’s so hard for my brain to understand the spatial and to piece things together. It makes me realize how much of my orientation and mobility is rooted in kinesthetic logging in my muscles and tissues because that’s the only way I access spatial.” -Nai
- Understanding narratives when I’m reading: “The lifetime of effort where I was trying to just see letter by letter while my classmates were building reading comprehension skills were stolen from me… And I can’t visualize it. If I read a story, it’s just words on a page. It doesn’t come to life in my mind. I still feel a lot of shame, and like I’m never going to get over that hurdle when I try to read stories.” -Nai
- Using the white cane: “The white cane is so difficult for me to use. Not because it’s a complicated technology, it’s just emotionally difficult because I have such a bias and stigma toward it… CVI is an invisible disability. And when I have a white cane, it’s suddenly known and visible. And so I’m figuring a lot out.” -Christina Roma
Important messages for practitioners working with people with CVI
- Learn about CVI deeply: “When meeting and interacting with people living with CVI, make an effort to learn about the condition and how it affects a person living with it. One way you can do this is to spend a day with someone with CVI, in person, preferably, to gain insight into how that person sees and interacts with the world. Remember, a person who has had CVI since birth or early childhood, like myself, doesn’t know how the same world is seen by others. And CVI is not a condition that you can learn about just by reading a textbook. You actually have to see it for yourself. So by knowing more about it, it will be easier for you to have a better understanding of that person’s needs. CVI hasn’t stopped me from living my best life, but I believe that there is more that could have been done to make life a bit easier to navigate for people like myself.” -Rafael
- CVI is a big deal—do not dismiss people with CVI: “Children with CVI will grow into adults with CVI. If these children are not diagnosed on time, and help and intervention shortly after their diagnosis is not offered, these children will have much difficulty navigating their way through life as children, as teenagers, and adults. Please do not dismiss them due to a lack of misunderstanding or training, but be patient and stop so you can actively listen and hear these big or little people. Your judgment may have a profound effect on these people, and this is the last presumption they need.” -Dijana
- CVI leaves no stone unturned: “CVI can lead an adult person into the depth of darkness just as they try to stay afloat. In my case, it has left a hole in my life and identity, as understanding the visual world, in part, integrates a big part of your identity and how you relate to the world and people within, touching every aspect of your life. And unfortunately, CVI leaves no stone unturned.” – Dijana
- Give people with CVI the freedom to choose what works best for them: “The number one theme is autonomy and choice. In the CVI world, there are a lot of people who are either trying to help a person with CVI maximize their vision or help that person use non-visual techniques. There’s often an outside goal imposed on that person of what they should do, how they should cope with their CVI, or learn to function. And I would say that I’d like to usher in a new paradigm where we give that full choice to the person with CVI, and that includes, especially, children and young adults with CVI… Whether you’re working with CVI children or adults, let them decide if they want to use their vision, if they want to do non-visual, if they want to go back and forth, or use both. Give them that freedom to choose what works best for their brain in that moment with all the factors, internal and external, that are happening. Only that individual can know what they need, and they need that latitude.” -Nai
- Don’t assume and give options: “Don’t assume. Everyone I meet with this same diagnosis has different specifics. Give options. Say, would you want to do this? Would you want to do that? Do you want to do that? Whichever they choose is equally fine. It’s really up to them. Don’t assume.” – Christina Roma