My experience transitioning to college as a student with CVI

Jack shares his lived experience with CVI, navigating the transition from high school to college, and what he gained from the Compass program.

Download the video transcript.

Jack Brossart presented to our CVI community about his experience with CVI, what he gained from the Compass program in preparation for a successful transition to college, and the strategies and supports that work for him at the University of Arizona. During this Q&A, Jack answered questions about navigating his new school and making new friends with the help of his guide dog, Laredo. He also described his unique understanding of his vision with CVI, the numerous evaluations he underwent before finally receiving a diagnosis, his dreams and goals for the future, and much more. 

When we center the voices of people with CVI, listen to them, and learn from them, we can help move the field forward and improve outcomes for all people with CVI. 

Below are excerpts from our conversation with Jack.

Jack’s diagnosis journey, need for accommodations, and preparing for higher education

Rachel Bennett: You’ve shared that you received a CVI diagnosis when you were 15 years old. Bring us back to you growing up. When did you realize something was different about your vision? And what are some of the strategies you used in school or at home in the community before you knew you had CVI? 

Jack Brossart: So, I actually remember in elementary school, when we were walking out to the playground, I would take my hand and follow along the wall. And I would always follow someone. That was one of the odd behaviors that led to people questioning my vision. 

Growing up, there were not many academic accommodations until I got the diagnosis, and the diagnosis was very important in getting those accommodations. I have good sight for stuff that’s close to me if it’s in large print, so that was my main accommodation.

I’ve always known my vision is a bit odd. But when I got the official diagnosis, I was just a kid in a candy store. I was so happy that I could put a name to all these weird things—people disappearing right in front of me, all that kind of stuff—that had been happening for years. And we had a name, and there were people who researched this.

I think that is one of the reasons I like science and the brain so much. I was in a neuroscience research lab when I was a kid, looking at my brain scans. When I trace my interest back, it really started there.

RB: What was the diagnosis journey like? And then finally knowing you have CVI, where did you go from there?

JB: The diagnosis journey took a long time. It took nearly 10 years for a diagnosis. And how I was diagnosed was an unbelievable fluke. 

My mother grew up in New Hampshire. And she was friends with the kid next door whose mom is Dr. Mary Morse, an expert in visual impairments, who worked at Perkins for 30 years or so.

Dr. Morse connected us to the Lab of Visual Neuroplasticity at Harvard Medical School and Mass Eye and Ear with Dr. Lotfi Merabet. We went into his lab once over the summer, and he was the one who diagnosed me. So, that was how I got diagnosed: just by my mom talking to people.

The next steps after diagnosis were just—no one really knew what to do because I was this blind kid. I couldn’t really get around. So, I had O&M training. But no one really knew exactly what to do. So it was a lot of just asking people to just listen to me and how my vision works. I think there was a lot of debate and there was a lot of, ‘Well, how do we do this? Should we train you like you’re fully blind?’ And I insisted. I was like, just train me to where I need it.

Not everyone with CVI needs to be trained like we’re fully blind. I’m not fully blind, but I cannot walk around without a cane or my guide dog. That’s just weird for people to understand. And don’t press technologies on me. Just let me tell you exactly how much I need. The most important thing of the journey was figuring that out. 

Not everyone with CVI needs to be trained like we’re fully blind. I’m not fully blind, but I cannot walk around without a cane or my guide dog... It’s very, very important to find this medium between being trained to think I’m fully blind and saying I still have some vision.

RB: And what did you tell people what you needed?

JB: Well, there were a lot of debates and a lot of questions about how I would be accommodated within academia. And a whole lot of people said, well, we just need to train you like you’re fully blind. And I said, ‘Well, I can see the screen of my iPad and MacBook. Why? I don’t get it.’ And I pushed back on that very hard. 

Eventually, we reached a scenario where people around me accepted. They were like, ‘OK, he wants to use the technologies that he thinks fit his vision,’ which for me is sometimes VoiceOver [text-to-speech feature] and big text. That’s it for how I interact with my computers. Within the world, yeah, I’m trained like I’m fully blind. I have a white cane and a guide dog.

But it was a lot of just exploring different stuff and going, you know, I hate JAWS, and I don’t need the computer to read me everything on the screen. I can see it. Why are you telling me it needs to do this? That’s not how my vision works. So it was very, very important to find this medium between being trained to think I’m fully blind and saying I still have some vision.

Andrea Rutherford: When you talk about using VoiceOver and turning it on and turning it off, how do you determine when you need it versus when you don’t?

JB: When I feel tired, I just turn VoiceOver on. When I don’t feel tired, I leave it off. And that’s the utility with my iPad, MacBook, and my phone that doesn’t come with any other screen reader that I just love. I don’t need it all the time. I use it when I need it. I can read big print, but I usually just use voiceover to read print. I love audiobooks. Yeah. I think I have 70-plus titles on Audible.

RB: You mentioned that you’re functionally blind out in the world. Can you describe what that’s like for you?

JB: I cannot process movement, how far things are away, or how quickly they’re moving to me. Everything just gets really, really blurry. I have a lot of problems with light. I have a hard time with things that are too bright.

So navigating out in the world, I’m pretty good with a cane, but I have a guide dog, and he’s just awesome. He does all of the stuff that I have a hard time doing. So, with my cane, I would bump into people. I would bump into cars. He just steers me around all that. So it’s not that I can’t see, it’s that it doesn’t get to my brain in time to make decisions about do I go left or right here. 

RB: Are you able to recognize those landmarks when you’re closer to them versus when you’re farther away? 

JB: Vision gets a little better when it’s close. But I mean, I’m lucky that pretty much every building on campus actually looks really different. So I can figure out where we are. And the paths are different. So there are a lot of different markers that I’m like, ‘OK, I know where we are.’

AR: Let’s talk about what brought you to the Compass program.

JB: I wanted to go to college my senior year of high school, and we weren’t exactly sure how I would do that. So [my mother] found Compass and thought that that would be a great idea to prep me for college. 

Honestly, when my mom first said it to me, I was like, ‘Really?’ But very quickly, I was like, ‘OK, this is actually really, really, really helpful about learning certain skills in college.’ I learned a lot of new skills—about self-advocacy, O&M, and time management. I didn’t go to a good high school, so I needed to build some skills, and I did. 

Compass was about practicing skills I didn’t have an opportunity to practice in high school. We did a lot of self-advocacy prep. We did a lot of orientation and mobility skills. We talked a lot about what college is like. How do you do time management? How do you do all that kind of stuff? That’s more what we talked about. And it was all geared to how you do it when you’re visually impaired. Everyone knows what it’s like to help blind people in Compass, and everyone is there to help you with what you need specifically with your vision in college. 

And I cannot tell you the amount of times during freshman year where I was like, ‘OK, Compass really paid for itself. This was very beneficial.’

AR: Well, as director of Compass, I’m happy to hear that… 

The impact of CVI and his guide dog on Jack’s social skills

AR: Let’s talk a little bit about social life. I know you mentioned having a lot of friends. But we also know that CVI can impact social skills. What has that impact been like for you? 

JB: OK. Freshman year I was active. I went to dorm events, all that kind of stuff, all with my white cane. I had three friends freshman year, two of which are still dear friends. This year I show up with a cute dog and all of a sudden I have 20 friends. I have like, five new good friends this year and like 10 other study buddies and acquaintances 

The turnaround has just been unbelievable since having a guide dog. Besides the navigational support, he’s just a great conversation starter and he’s absolutely adorable. He’s a friend. And he’s not just a friend to me. He’s a friend to everyone.

If you had told me all of that last semester, I would have been like, ‘No, that doesn’t happen.’ But it all has happened because I have had a guide dog. And nothing changed about me since last year. I’m the same person. But having a guide dog, people actually say hello, which is great. And that has been an amazing experience.

Last semester, I had a class in the psychology building. There was a very quick route where I left the building, crossed the street, and walked back to my dorm. It was the quickest route, but it turns out that that’s where all the sorority houses are.

I couldn’t get from there to my class or back to my dorm in a timely manner because there were so many people who were like, ‘Oh wow, he’s so cute.’ I’m like, ‘Uh-huh, yep, I got to get to class.’ So we’ve switched up that route. We don’t go there anymore. And that’s not insulting anyone. But I just found that absolutely hilarious. Every time that happened, I got to class, I just died laughing. I was like, ‘This is hilarious, but I can’t be late.’

AR:  How did Laredo come about and what was the process for the school?

JB: I applied my senior year of high school to Guiding Eyes For The Blind. I was accepted, and I was on a waitlist for two years. They’re really backed up because of COVID. And a year ago, I got a phone call, and they said, ‘Hey, we have a potential match for you. Are you free in late May?’ I said, ‘Yep, I’ll be free.’

So then I flew out to New York at their campus and I trained with him there for 10 days. And then we flew out to New Hampshire to spend the summer with my grandparents and got to know him there. Guiding Eyes For The Blind was just amazing. We did so much training. They really paced it well. We started out slow and slowly you gain confidence with your dog’s ability to do everything. And then when we got on campus, it was amazing. It was like, wait, I’m not bumping into stuff anymore. I’m not jabbing my stomach with my cane, which really hurts and happens a lot.

I can’t say how amazing he is. He’s just changed my life. And 90% of the time, he’s just a regular dog. He chews on a bone. He plays with his squeaky toys. He loves eating his food. But then 10% of the time, I’m like, ‘This dude’s amazing.’ It’s just an amazing thing. He’s my best friend. 

Organization and visual fatigue

RB:  Can you talk about how you stay organized?

JB: Calendar. Absolutely everything, no matter what it is, has to go in the calendar. Every assignment, large or small, has to go into the calendar. 

Every Sunday, I sit down and plan out my week because I have the assignments in my calendar. I go, ‘OK, how long will it take me to read this? How long will it take me to do that?’ And I block out time in my day.

I plan out my week, and that allows me to leave lots of time for friends and playing with my dog. You’ll get a syllabus for every class that has every date, very orderly. All that is perfect, and every single piece of that needs to go into your calendar.

I don’t use Google Calendar, just the regular Apple Calendar is really accessible. That works well. 

The other piece of advice I would add is to really make an effort to know your professors. They teach a class of 200 people, and one of them told me they’re lucky if they know the names of 10 students. Just go to their office hours. Ask them questions. Send an email introducing yourself. That kind of stuff just goes such a long way. 

And if you have an assignment, of course, never ask, ‘Hey, this is the draft. What do you think?’ But go, ‘I’m curious about how I should interpret this question. Is this how you want me to think about it?’ That stuff saves you an endless amount of time and is just so important. So a calendar and taking advantage of professors’ office hours and the TAs are often very good.

RB: What happens if you get too tired in the middle of class or at the end of the day when you still have to do classwork and homework? How do you manage that? 

JB: That goes back to planning. I don’t really get tired in class, but at the end of the day, if I’m working through an essay, I never do it the night before. It’s done a week in advance. 

And it’s not just visually tired, it’s neurologically tired. I want to go to bed. I’m tired. It’s just listening to your body. ‘I can’t do it right now. Just leave it. I’ll do it in the morning.’ But doing that in advance, obviously, of a due date is important. So making sure things are nearing done two or three days before an assignment is due is really important.

Figure out what stuff you can do when you’re tired and what stuff you can’t. If you have to do this little silly activity for a class, I can do that when I’m tired. But if you have to read a complicated thing or do your statistics homework, I have to do that when I am not tired. So planning is just very, very important. 

It’s not just visually tired, it’s neurologically tired. I want to go to bed. I’m tired. It’s just listening to your body... Figure out what stuff you can do when you’re tired and what stuff you can’t.

Jack’s dream for the future and final takeaways

RB: When thinking about your future, what are you most excited for? 

JB: I want to be a scientist. Probably all of you have had to read those really meaty statistical research articles. You all hate them. I love those. I want to write all that stuff, advance the field, do science. But here’s the thing I want. I want the whole blindness, “blind scientist” “guide dog” thing—I want that to be a small footnote. I don’t want to be known as “the blind scientist.”

I was once asked by someone, ‘Are you going to research psychology from the disabled perspective?’ I don’t even know what that means. I’m interested in aggression and amygdala activation and the limbic system. I want to research that. My disability doesn’t have anything to do with that.

So what I’m excited for is, and it will be a ton of work to do, but at the end of the day, having published research papers that replicate and are good, and there being nothing that identifies it as, ‘A blind guy did this.’ I want people to go, ‘Wait, whoa, you’re blind? No way, I’ve read your paper and wow, that’s so cool.’ That’s what I want.

But I want my vision to just be a tiny little footnote. I don’t want there to be some headline in a journal: Blind Psychologist Does This. No, no, no. I just want to advance the field that I’m passionate about and do scientific research in a way where my vision is just a little footnote. I’ll sleep well at night. 

RB: Is there anything else you’d like to share before we wrap up? 

JB: Don’t assume that every one of us is the same and needs to be treated like we’re fully blind. The first question is not, ‘Hey, when do you want to meet to learn how to use JAWS?’ It’s, ‘Hey, what’s your vision like?’

You need to find technologies that work with our vision because some of us have a lot of vision, and some have very little. And some of it changes throughout the day. So you need to find what technologies work with your specific visual capability and be OK with us wanting to use our capabilities. I can see the screen of my computer, I don’t need something to read the entire screen.
Out in the community, I can’t walk around without a cane or a guide dog. Just be OK with that.

Don’t think that there’s this playbook on the shelf that works for people who have other conditions that will work for CVI. CVI is often very complicated.

Compass is a nine-month virtual program for college-aspiring high school students with visual impairment. It is designed to help them proactively explore and develop a plan for building the critical academic and blindness skills they need to reach their post-secondary goals.