CVI parents are advocates. They’re champions. And, to their kids, they’re heroes. When Brittany and Joseph Hewitt’s daughter, Harper, entered Kindergarten at Southside Elementary in Columbus, Indiana, they knew she deserved to access her school’s staircases like other kids.
But she couldn’t do it without high-contrast tape.
When the administration pushed back and told the Hewitts that a ramp was enough, the family sprung into action, launching a Change.org petition, speaking to their local school board, and garnering media attention until they got traction. Now, Harper moves through school alongside her classmates.
“We asked ourselves if this was the hill to die on. We weren’t sure if this was the fight to take it all the way. But then we talked about why we wanted this. We wanted our daughter to feel safe on the stairs like every other kid—and realized we had no other choice but to take this fight all the way,” Brittany says.
It seemed like such a simple request, but it wasn’t. Here’s the family’s powerful story, as told by Brittany. It mirrors what so many disability parents face—exhausting uphill battles, seemingly pointless pushback—and, hopefully, triumph.
Getting a diagnosis
Harper was diagnosed with CVI when she was around 12 months old. She was born nine weeks premature, and she had three brain bleeds, one of which was on the visual cortex. At first, we thought she was blind because she wasn’t responding to movement or light. But, even though she had extremely low vision in one eye, our ophthalmologist told us she wasn’t blind.
Eventually, we got involved with First Steps. This is Indiana’s early intervention program, which provides services to infants and toddlers from birth to age three who have developmental delays or disabilities. First Steps urged us to check out Cincinnati Hospital’s low-vision clinic. There, we had a low-vision assessment and saw an ophthalmologist who specialized in CVI. We began to understand what CVI is. We started constantly researching what it meant for her, both now and in the future. I went down a rabbit hole, constantly just researching and worrying.
Now, Harper is in Kindergarten, and her team has been amazing: the principal, her occupational therapist, vision therapist, O&M therapist, general education teacher, speech therapist, and hard-of-hearing therapist.
We were told by multiple therapists that high-contrast tape at the end of each stair would help her know where the edge was, allowing her to feel safe going up and down. Over time, we requested that her elementary school put tape on all the stairs. They ended up taping the stairs inside—but we were told that the school district wouldn’t paint or tape exterior steps, because there was already a ramp.
I believe that we were the first family to request this accommodation, and we felt that she shouldn’t be limited to the ramps. So we emailed our superintendent, director of special education, and our school board representative about our request. We never heard back.
It didn’t seem like our school was taking my request seriously at all. We also emailed their director of operations, because we were told that he was the one who refused to paint the steps. He was very flippant: He said that, because there was an ADA-compliant ramp, they didn’t need to do it.
It was when we started to involve the public that we began to get responses. We decided to start a petition to help visually impaired students on Change.org to raise awareness about the issue and to get public support—and we ended up getting 740 signatures!
I wrote: “We, concerned parents and community members, urge the school administration to prioritize the safety and well-being of our visually impaired students. By taping the exterior stairs with High Visibility Tape, we can create a safer environment that empowers these students to navigate their surroundings confidently. Together, let’s advocate for a more inclusive and secure learning environment for all students, regardless of their visual abilities.”
I also spoke at a school board meeting, explaining CVI and why Harper needed this. After the meeting, many supportive parents came up to me, wondering why the school wouldn’t do it.
Then, I emailed a state representative, who told me that he was meeting with the superintendent. He was supportive—but nothing came of that, either. I tried emailing the superintendent directly. We met, and once again, I requested the exterior stairs to be painted or taped. Again, I explained why. He observed Harper and spoke with all her therapists. I also had an article written about my request in the local newspaper, and I think that helped. About a week or two later, he decided that they would paint the stairs.
This whole process—from the first request to them painting the stairs—was over two-and-a-half months. I felt defeated and disheartened; it was such a little request, but they just did not care.
The power of persistence
My advice for other families with children with CVI who are trying to engage with accessibility issues at school is to never give up.
Don’t let the fact that you’re disheartened stop you from reaching out to everyone possible who could help move along your request.
Don’t be afraid of disagreeing with your child’s school or people whom you feel are the “experts.”
Don’t let them tell you that they cannot do it “because.”
Don’t let them intimidate you. All you care about is your child, and that needs to be the focus. You’ve got this, and you are your child’s biggest advocate. You are the only one who wants what’s best for your child.– Brittany Hewitt, CVI parent and advocate
Also, realize that you’re not alone. It’s so hard sometimes, and it feels so lonely at times. What worked for me was putting the school on blast publicly. The school was afraid to look bad, and my speaking at the school board meeting in front of a lot of people, I think, made a difference. I think that helped the superintendent come to the decision to accept my request.
It was challenging. Speaking in front of people is difficult. Speaking to a reporter is difficult. Reaching out to everyone was hard. But it was the only thing that worked. Having a child with CVI is difficult, but I wouldn’t change it for anything. I’m sure most parents feel the same way. We can handle it because we know it’s making the world a more accessible, inclusive place for our kids. That’s what’s most important.
I hope more people understand that kids with disabilities are just kids with different abilities. They can do everything neurotypical children can do, but they just need the world to be accessible to them. Not everyone sees the world the same way. If society could realize this, then maybe it wouldn’t be so hard to raise a child with disabilities.