Adults with CVI share how “CVI leaves no stone unturned”

Adults with CVI share their strategies, challenges, and a message to practitioners working with people with CVI

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

Areas I’m still trying to figure out about my CVI 

Important messages for practitioners working with people with CVI

A photo of Zach laying on Chris's chest on a couch. They are both smiling.

Celebrating CVI dads: Chris and Zach

portrait photo of LJ Seiff

My experience as a student living with CVI who uses AAC

Tom and a friendly dog touch noses while they sit on a boat at sunset.

Celebrating CVI dads: Steve and Tom