Story
How learning that my vision impairment is brain-based changed my life
Morgan's CVI diagnosis brought self-understanding, community, and insight into her cerebral palsy—now she hopes others get answers sooner.
Hi, I’m Morgan—aka YourHotDisabledBestie on Instagram—where I share my life experiences, including having CVI (a brain-based vision impairment), with my besties. I use my platform to make disability less intimidating for onlookers and encourage curiosity over judgment. I always say: it’s human to look, to wonder. And yes, I am different. You can ask questions, but please just ask kindly.
On Instagram, I share tips and tricks, advocate for disability policies, and openly talk about my story. I was born with a visible limb difference and diagnosed with Spastic Diplegia Cerebral Palsy after missing my walking milestone at age two, despite a typical full-term pregnancy and birth.
I also have Periventricular Leukomalacia (PVL), a type of brain injury typically found in premature babies. That’s what makes my case unusual, since my birth was full term and expected. The MRI shows damage consistent with a sudden loss of oxygen in utero between 26–32 weeks gestation, but no source has ever been identified.
Nothing has been medically proven beyond the imaging that shows burst ventricles. This scan finally helped connect the dots on my motor difficulties and vision issues. Turns out, it’s all rooted in brain damage; my eyes themselves are perfectly healthy.
Over the years, I’ve received treatment from institutions like Boston Children’s Hospital (under Dr. Rosenthal) and Bassett Medical Center in Cooperstown, NY (with Dr. Joseph Dutkowsky). I’ve also been affiliated with the Weinburg Center for Cerebral Palsy at Columbia, where Dr. Dutkowsky has overseen my care and included me in a larger group of patients he noticed were struggling socially. He has contributed to research and policy programming, including work with the Cerebral Palsy Foundation.
How my CVI was discovered and its impact on me
Dr. Joseph Dutkowsky, an orthopedic surgeon, was instrumental in helping me discover that I have CVI (Cerebral/Cortical Visual Impairment). As an adult, when I reached out to him for guidance on transitioning my cerebral palsy care, to ask questions about my IEP, and how to help me better access services in college, he realized I had been struggling with vision issues for most of my life.
As a child, I thought running into things was just part of CP. I was highly aware of my body in space, so no one suspected a visual processing issue. But Dr. Dutkowsky immediately started asking me targeted questions about my vision that made everything click:
- “Is long division hard?”
- “Do you feel afraid crossing the street at a crosswalk?”
- “Even when using a ruler, do you struggle to draw a straight line?”
It wasn’t just because he was a CP doctor—he was familiar with CVI and recognized that my challenges could be related to how my brain interprets visual input.
Incredibly, his wife, Karen, was a TVI (Teacher of the Visually Impaired) and a pioneer in the CVI field. She first recognized the CP-CVI link when she asked him, “Why are all of my students also your patients?” Unfortunately, Karen passed away a few years ago, but her work lives on.
After visiting Dr. Dutkowsky, I researched dysgraphia through the Child Mind Institute, which led me down a rabbit hole of information on CVI. I discovered that I ticked every box for a brain-based vision impairment. It described the struggles I had experienced my whole life. At age 18, after my freshman year of college, when I was transferred to adult care, I finally got a CVI diagnosis. It was freeing.
Medical and educational roadblocks
Medical professionals often dismissed CVI or referred me to a specialist without fully understanding it. I once saw an ophthalmologist who had never heard of CVI and attributed my symptoms to “neurological issues” rather than a visual issue. I later learned that this is called diagnostic overshadowing, and it often happens to people with multiple diagnoses.
In December 2024, an ENT, Dr. Richard Hughes, Jr. (Ear, Nose, and Throat specialist diagnosed me with vertigo, helping me connect the dots. This ENT, who has treated my family for years, explained that my brain damage from CP likely intensified my symptoms. Other factors, including medications and hormones, especially since I’m female, can also have an impact.
If I could give one piece of advice to women and girls aging with CVI, it would be to monitor their hormones and bloodwork. It may shed light on some of your pain and discomfort, particularly swelling!
Getting school support with an undiagnosed brain-based vision impairment
In school, the staff misunderstood my needs, especially in math and science. I hated math—not because I didn’t understand it but because tasks like graphing felt like a fight. Everything seemed too close together, making it overwhelming. I have the same problem with Excel spreadsheets. I read whole pages at once, rather than tracking line by line like others. It was always a fight to prove I legitimately couldn’t draw or build anything in art, family consumer sciences, or technology class.
My records always showed that I had significant challenges without knowing what to formally call it besides severe dyscalculia. Now, I know that it was CVI, and my challenge wasn’t with concepts but with formatting.
But I did find support in the classroom. Mrs. G, my aide, who was there for orthopedic support, got me through middle school. My aide took notes for me so I wouldn’t miss information. She has the biggest heart and advocated for me to be fully immersed in the classroom. She also supported other students while I was mainstreamed.
They also helped with tasks like graphing. I used Kurzweil software for audio support, which significantly improved my test scores—I process information better by listening. Readers could adjust the tone and pace of the dictation service, making it easier to follow notes and exams. My other accommodations included:
- Time and a half on tests
- A separate testing space
- Extra study halls
Outside of the classroom, I looked to friends for support. Jean Ellen, who is now a local artist and a friend to this day, helped me finish all my art projects in middle school.
Context for my educational experience
Many of these accommodations were secured because:
- I had an orthopedic impairment. In today’s terms, this would have been fought to qualify as a 504 plan, but I fought for more. Given my multiple diagnoses, extensive paperwork, and parents who understood the benefits of an entire plan, I received the support I needed.
- I was always advocating for myself.
- I was fortunate that both of my parents have backgrounds in education administration and medicine. They were able to provide the necessary documentation from my medical team to prove my needs in the classroom.
I recognize that privilege and stand with families of all kinds in ensuring that plans are reviewed, adequately documented, and taken seriously. Students should also be fully involved and have access to their rights in the classroom—to say, write, listen, think, and feel in a way that best supports them. Their plan should reflect their needs. Even something as simple as a student sharing how their day went is vital to an IEP meeting.
Explaining CVI to others is difficult. It’s frustrating not to be understood, but I know I’m not alone. I’m grateful to have finally found a community of individuals who truly get it.
Daily life with CVI
Everything began to make sense once I started to understand how my vision impairment was based in the brain. Understanding CVI also helped me more deeply recognize how my CP and near-sightedness affect me.
Near-sightedness runs in my family. I’ve always chalked my vision issues up to that. Since the ophthalmologists said that with my current prescription, my eyes were technically healthy, I used to ignore signs that something deeper was going on. But really, the red flag is my sustained brain injury from cerebral palsy. That’s where the bigger impact on my vision comes from.
For example, I’ve always had difficulty with coordination and often run into things. My vision also changes day to day, especially depending on the lighting. Certain lights can make things blurry or difficult to focus on. I often get headaches because of this. There’s a lot of pressure in my head, too, and as I age, I notice it more often.
Other impacts of CVI on my daily life include that I can’t drive—not because I don’t want to or don’t have the clearance, but because I feel unsafe. I worry about hurting someone or myself on the road. The message “Objects in mirror are closer than they appear” is very real to me.
Some solutions I’ve discovered include environments where there are routines and rules. Due to my medical trauma, I have anxiety and OCD. But routines, rules, and structure give me a sense of control. I love my planner, my calendars, and my schedule, accompanied by color-coded pens and post-it notes. I value this system because it helps lighten my mental load as I navigate spaces using technology and other tools.
CVI makes even the simplest things challenging.
I work on these skills two to three times a week at a gym with personal trainers who help me focus on my activities of daily living. As I’ve aged, that’s helped improve my mental health around my needs. They offer proprioception work and practical tips so I can feel more confident in functional settings. Some of the tasks we work on are:
- Catching balls
- Going up steps
- Jumping
- Weaving through tight spaces
- Getting in and out of the car
- Getting out of bed
- Walking backwards
- Getting into the bathtub when there’s water in it (I almost always whack the bottom of the tub)
- Brushing my teeth
- Pouring water into my service dog’s bowl
- Drawing or coloring anything
- Reading any type of graph or chart
Navigating public spaces with CVI and cerebral palsy
Public spaces are often a source of anxiety. My body needs time to adjust, and my brain has to process how to move safely. The challenge with CP and CVI is twofold: People see that I’m disabled but don’t always understand how it affects me.
In college, I used to go out by myself, but now, I typically stick with family and friends and rarely go out completely alone. Now, my support team and I carefully preview the details of places I like to go and activities I enjoy to minimize extra challenges. While I can manage in new spaces, those who know me best understand that I might be a bit more ornery in them.
For example, in restaurants, I tend to count the space between tables and the bathroom—not just a quirk, but something important to me. I may also ask someone to pull my chair out instead of doing it myself because I often misjudge distances. In stores, my assistants help by moving my shopping cart when I need to turn or navigate tight spaces; otherwise, I bump into everything all the time.
CVI technology and accessibility
Using different types of technology also comes with challenges, depending on my needs. I prefer specific fonts and color combinations. If something is important to me, it’s color-coded. When writing emails or browsing the web, I favor my laptop over my phone. I also tend to hold my phone very close to my face when using different apps. Since I’m nearsighted and wear glasses, I dislike taking them on and off throughout the day, so I often read either underneath or over the top of the lenses to work around the issue.
Advocacy and finding CVI and cerebral palsy community
I live in Saratoga Springs, NY, with my family and my service dog, Wolf (I call her Wolfie because she’s legally named WOLF V.). She’s not a guide dog, but she helps me with activities of daily living to maintain as much independence as possible. I love advocating for others like myself and am always happy to travel, speak, or assist in any way I can.
Before I knew what a brain-based vision impairment was, I was hesitant to reach out for help, especially when I thought Perkins School was only for blind individuals. I didn’t realize that CVI, like blindness in general, exists on a spectrum. It was also the collaboration between CVI Now and CPARF that convinced me to consider CVI, on top of the statistics between my cerebral palsy diagnosis and CVI.
Connecting with others has made me feel like my needs are not outlandish. This is simply how I experience the world. I cannot control it, but I can use my voice to advocate for proper research and care. I’m eager to advocate for others with similar experiences.
A message to families and individuals with CVI
I want readers to know, CP is a spectrum as well. Sometimes I’ve felt so fortunate with the level of support I have that I hesitate to speak up or advocate for my needs — as if they might not seem “serious enough.” Please take into consideration, I have help, lots of it, and I have had it my whole life. But I fought for it. I am so incredibly grateful for my parents, my friends, my medical team, and the community at large. Having the support behind me makes the weight of surviving in a world that was not made for me tolerable.
To every parent and child with CVI: I know it’s hard. I won’t tell you otherwise. But never lose “sight” of your strength. It’s okay to admit your life didn’t turn out the way you might think for you or your child. Their journey with a brain-based vision impairment is their resume. Your child will tackle advocacy, problem-solving, and management before they’ve ever applied to a full-time gig. Their future and yours as a parent are bright.
I know you didn’t ask for this. However, you are doing great with the cards you were handed. Everyone has a backpack of troubles. But individuals like myself, we just leave our zipper wide open, hoping someone might need to just “borrow a pen.” Insight is powerful. Stories are powerful.
As I always say, be a catalyst. You never know who needs a bestie.
XO, YHDB
