Story
How Molly found her rhythm and confidence with CVI and self-advocacy
Molly, 23, shares the strategies required for navigating life with CVI. Find out how she blends self-advocacy and her passions for psychology, music, and sports while empowering others.
Molly Field, 23, dreams of running her own business that combines two of her many passions — psychology and sports. In the meantime, she’s a Work Coach at a new school for students with Social, Emotional and Mental Health Needs (SEMH) — a position for which she’s uniquely qualified. Molly has CVI, or Cerebral/Cortical Visual Impairment, a common, but alarmingly underdiagnosed form of blindness that impacts everything from her social circle, to her hobbies, to navigating work tasks.
Everyone’s vision with CVI is different, though. It can even be different day-to-day. Some with CVI report that their vision is affected by their own physical state or even the weather. For Molly, one way her CVI manifests is with tunnel vision, meaning that she has narrow visual fields. That can make some of her other passions, like long-distance running, reading and drumming, particularly difficult.
How Molly’s CVI manifests
“I can only see what’s in front of me,” Molly explains. “If I walk into a room, for example, I can’t see the whole room. I can only see part of what I’m looking at. I can’t really see anything above my head, or well, below my nose either.”
Stairs present another problem. Molly mentions that since depth perception is a challenge for her, walking down stairs is “quite difficult” if they’re not painted white or yellow.
While Molly is also an avid reader, reading with tunnel vision presents a major challenge. On top of that, Molly says she can have a hard time understanding the storylines of what she’s reading — citing visual processing issues that are often associated with CVI. “If there are lots of things happening or different people being described, it gets tricky to know what’s actually happening,” she says. Additionally, a page filled with lots of letters, words, lines of text, and pictures can often overload a reader with CVI’s neural network, making it hard to use vision when looking at a cluttered or crowded page.
Molly mentions that sometimes when reading she is “understanding parts of it,” but “can’t put it all together.” This is especially true when she’s watching a TV show or movie. “In general, I find understanding and following stories difficult when reading them, but following films can be easier, due to having visual cues to help remind me of key ideas, themes, and characters,” she explains. “They can still be difficult to follow though.” All at once, Molly needs to hear the lines, background noise or music, watch the characters, and follow a narrative. It’s a great demand on the senses for someone who has difficulties with visual processing and sensory input.
“When there’s a lot of different types of information happening at once — like visual information, verbal information, and then written information — then that’s quite overwhelming,” Molly explains.
Drumming against the odds
You might think the symptoms of her CVI would also hinder her from participating in loud, physical activities that require precision and focus — but you’d be wrong. In fact, Molly is making a name for herself on YouTube as The VI Drummer. If you recognize Molly from our piece on how music impacts people with CVI, you might already know that she knows how to drum to songs by some of her favorite artists like Kylie Minogue, Adele, Disturbed, Within Temptation, and Nickelback. She was introduced to rock music by her dad, and started taking drum classes just two years ago, as part of a program created by the royal family in the United Kingdom, where she lives.
But getting there wasn’t easy. Molly had always wanted to drum, but she faced resistance from school due to noise concerns, not to mention learning how to read music and drum with what Molly describes as, essentially, pinhole vision.
“I just really wanted to do it,” Molly says matter-of-factly. She continues, “I’ve always loved music. I’ve tried other instruments like guitar and ukulele, but never got on with them. I’m better at making beats and enjoy it more.” And since sharing her progress videos, she’s only gotten positive feedback and hopes to someday make a career through her hobby.
Molly also wore a patch and glasses as a child to help balance her visual acuity. As far as vision supports that were put in place at a young age, she says it was “just the glasses, really.”
Even though Molly has had a CVI diagnosis since she was 2 or 3 years old, receiving a diagnosis and receiving support for that diagnosis are two very different undertakings. “People just had no clue what was going on,” with her CVI, she remembers. Like many disability parents, her mom was her biggest advocate throughout schooling. She fought to get her a statement of need, which gets the ball rolling for actually getting support in the classroom.
Finding her voice
It wasn’t until secondary school, when Molly was 11 or 12, that she actually started getting support for her CVI. She remembers having teaching assistants in all her lessons who would help her study, take notes, and encourage the teachers to adapt materials. They were helpful, Molly says, but she wasn’t convinced that they really understood visual impairments, or CVI in particular.
“They used to enlarge my work to A3 size, which is just the bog standard thing that everyone thinks people with visual impairments need,” Molly says. But with her tunnel vision, Molly points out that enlarging the font actually makes it harder to see everything on a page.
Instead, “you have to rewrite documents so that people can read it,” Molly suggests. “The teachers were actually supposed to do it, but most of them didn’t do it, which was the problem… It was really frustrating.”
As people with disabilities do, Molly made it work for her — because she had to. She adds that, “most of the time, it was really helpful when I connected with teachers really well, and the teaching assistants as well.”
Molly’s compensatory skills
Though she may not have realized it, Molly developed compensatory skills in order to pursue her passions for drumming, reading, and to keep up with her sighted peers. All people with CVI use compensatory skills. They are ways that an individual with a visual impairment learn to acquire, share and process information, or “fills the gaps” when learning.
One skill that she’s finely honed is her memory. As she navigates through any room with her tunnel vision, she’s only seeing what’s directly in front of her. But when she subconsciously and quickly memorizes where objects or people are in a room, she can navigate it. More specifically, she can drum along to her favorite songs if she has already memorized which drums are where.
She describes using the same skills when meeting, greeting, and holding a conversation with people. Think about conversational norms like complimenting someone’s outfit or haircut, or even talking about what’s going on in your environment. Now think about how you would achieve that if you can only see someone’s “eyes and eyebrows, maybe their forehead and a bit of their hair,” as Molly puts it. You would have to rely on memory.
The thing about compensatory skills is — like CVI, they can be invisible. Molly explains that “to other people, it might be like, ‘Oh, Molly knows everything in this room because she can see it.’ But it’s actually not. It’s because I’ve learned that it’s there.”
Skills and social pressure
And she uses those skills in every part of her day, like when navigating areas like a busy hallway or sidewalk, for example. These skills can also be a way of masking her disability. Molly acknowledges the tendency to mask, saying, “We mask a lot of stuff to make it look like we can see things when we actually can’t,” she says and shares an example:
“Today at work, I couldn’t really understand what somebody was trying to get me to do because they pointed somewhere, and I didn’t really catch what they said. So I didn’t know what they were talking about. And then they were like, ‘Oh, should we do it together?’ And I was like, ‘Yeah, sure.’ Because that’s a way of masking the fact that I didn’t see or understand what she meant.”
The social pressure to mask is also the primary reason Molly has a white cane but doesn’t always use it. “I only use it in London or really busy places,” she admits. “Random people knowing I’m visually impaired — It just feels a bit weird. I’m sort of trying to mold into everyone else.” She adds, “I recently got a sunflower lanyard but I haven’t worn it yet.”
Consider the social and mental effort of masking, combined with the demands of navigating visually and socially complex environments. It can take a toll. Molly shares that the constant need to focus, adapt, and make quick decisions — like determining whether someone is walking toward or away from her — requires significant mental energy. This effort can lead to visual fatigue, a common challenge for people with CVI.
CVI and self-advocacy
Despite these challenges, Molly recognizes that her compensatory skills are her strengths. They have not only helped her navigate daily life but also empowered her to make deliberate, impactful decisions about her education and future. When choosing a university, for instance, Molly prioritized accessibility over proximity. She reflects, “I made sure to pick a university that was going to give me the right support that I needed… rather than going based on how close it was to my house. Better to base it on what you’re actually going to be doing and what you’d actually get out of it.”
She also uses technology to make her life easier, using tools like screen readers and dictation software to support her work and studies. She lists Dragon and a screen reader called ClaroRead as tools she uses to check and write emails.
But above all, Molly credits her growing confidence and understanding of her CVI as key factors in her ability to advocate for and empower herself, both in academic and professional settings.
She recalls growing up with a disability, saying, “You get used to professionals telling me what I can and cannot see, or telling me about what my disability is, without me actually understanding it. But as I’ve started working and going through the education system, I think it’s helped me actually understand it a lot better. So I can actually explain it to people much easier.”
“You can’t just, like, wear glasses and it’s corrected,” she quips. “Now I feel like I understand what that actually means.”
Being able to explain your disability in a school or work setting is huge. Molly asserts that being able to self-advocate has impacted her social life positively, too. At 18, as she started attending university, she remembers going to lots of events, specifically for people with visual impairments. “I actually met lots of different people, and then that’s how I kind of got quite a good, close group of friends. We all understand each other.” “I feel like I’m part of the disability community, I feel quite welcome. And I feel like I know a lot of different people,” she shares.
In fact, Molly has learned that she’s a natural leader. “I organize a lot of different things where I’ve met people from different places, and then they’ve all come together, and now they’re actually meeting up separately, which is quite nice, because it’s like they kind of met through me.”
A vision for CVI inclusion
Molly has developed the skills to navigate a world that’s not designed for her. From using technology to enhance accessibility to pursuing her passions and fostering connections, she has proven that CVI doesn’t limit her — it shapes her approach. Her resourcefulness and leadership shine in everything she does, from excelling as a drummer to creating inclusive spaces with her friends.
Looking ahead, Molly’s dream of running her own business that combines her love for psychology and sport feels entirely within reach. With her drive, creativity, and ability to adapt, she’s not just overcoming barriers — she’s building a path forward for herself.
