Early Intervention Made Me Feel Like I Needed To Be “Fixed”

I was on the bus last week, on the way to pick up my kid from school, half listening to a new podcast recommendation, when I heard something I had to write down. As the bus approached my stop, I scrambled to send the quote in a message to myself, repeating the words in my head:

“Instead of affirming your child, you’re telling your child that ‘I don’t like who you are and I want you to be different.’”

I’d just started listening to NBC’s Grapevine podcast, a series about the Grapevine school district near Dallas, Texas; its increasingly anti-trans school board; and its impact on families and teachers. The quote was from a father about why he didn’t support religious counseling or conversion therapy for his trans child.

His reflection moved me, not because of my experience with gender identity, but because of the conversation I’d had the day before with a group of teachers and administrators at my child’s school about his individual education plan (IEP). They were concerned because my elementary school-aged child has a difficult time explaining his disability. He really doesn’t think there’s anything “wrong” with him. This was confusing to the staff, who questioned if he understood he was disabled.

To be honest, I’m perfectly OK with this confusion. Like me, my child was born with a neurological condition called nystagmus that makes our eyes wiggle and reduces our visual acuity. Unlike me, when it came time to enroll him in early intervention, his mother declined. I did not want his early consciousness to be shaped by the narrative that I grew up with, that if I just tried hard enough, my disability was something I could overcome.

As an infant, I began intense early intervention and visual therapy sessions. My mother, who had been working as a teacher, quit her job to stay home with me and provide even more consistent therapy. For many years, I was told that my “success” — that I could read, graduated from high school, got into a good college — was due to this effort. I was proud that I was focused and determined. From birth, I’d been pushed to try harder, try again, and maybe, maybe next time you’ll be able to see it. I can still hear my mom’s voice, encouraging me to keep working, urging me to look again, to keep my focus on the moving object, to try just one more time.

Looking back at it now, I wonder about the psychological impact of this early intervention therapy. When children, from birth, are placed in intensive remediation therapies, do we inevitably hear the message “I don’t like who you are; I want you to be different”?

One of the early interventions I received was prism glasses, in an attempt to get me to have a more “normal” head tilt. I used to see better out of the bottom of my vision, and so I would lift my chin to see things. I was 2 and a half, maybe 3 years old, and so I don’t remember much from this time, but I do remember hating the glasses. My parents told me the glasses made me trip a lot because of the new and strange redacted angle at which I was viewing the world.

The message I internalized from these therapies and interventions was that it was critical that I mask my difference and minimize its inconvenience to others.

My parents eventually gave up on prism therapy, and the refracted lenses were replaced with a regular glasses perception. I stopped tilting my head as I got older and became more attuned to the social pressure to stop tilting my head in “weird” ways, even if it meant I didn’t see things as well.

And that choice, to see less but look more “normal,” was the heart of my coping strategy for many years.

As I was writing this, I was curious if prism glasses are still used as a medical intervention with kids. As I started to type in “prism glasses” into the search bar, Google suggested “prism glasses for autism,” and I could feel my chest tighten. I knew that many interventions used on autistic kids are an attempt to stop or decrease stimming activities that non-autistic people might feel threatened by. I took a deep breath and clicked through to a website of a doctor who claimed that prism glasses and vision therapy could help autistic youth improve their eye contact and their tendency to look “through or beyond objects.” I’m not going to weigh in on the medical science here, but I’d suggest a healthy dose of skepticism for any treatment whose purpose is to normalize the behavior of disabled children for the comfort of those who hold stigmas against disability.

Tilting my head hurt nobody, and in fact, helped me see better. It was simply a manifestation of my difference that made people uncomfortable. The message I internalized from these therapies and interventions was that it was critical that I mask my difference and minimize its inconvenience to others. This was a terrible lesson to learn, one that made me prioritize not looking different over being able to fully participate in the world. In high school, I stopped using binoculars in class to see the whiteboard — an adaptive strategy that had always worked for me — because it made me look weird. I didn’t fight for accommodations in college and struggled academically as a result. And until my mid-30s, I never told potential employers about my nystagmus, which resulted in a lot of really awkward and failed job interviews.

So when early intervention services were offered for my child, I declined. I did not want his early consciousness to be shaped by this narrative. It was an easy choice because the science has come to show that with this condition, early intervention strategies do not in fact improve visual acuity.

Now, my son’s teacher in first grade is working with the class to understand and talk about different identities, and I love that this is the context in which my kid will begin to be able to articulate his difference. It also helps that one of his accommodations is using a connected iPad to view what the teacher is writing on the board, and everybody wants time with an iPad.

As parents and caregivers, your feelings around disability can either work to neutralize or amplify the stigma your child will face in the world.

I know there are times when early intervention services and other intense therapies and medical interventions can have important health and development impacts for disabled children. I’m not suggesting that every intervention should be declined. Rather parents and caregivers of disabled children have a responsibility to ensure they are not sending the message that their child would be more lovable if they cooperated and were “fixed.”

Talk to any disabled adult who was disabled as a child, and you’ll hear stories of medical staff and therapists who made us feel wrong for our bodies being ways we had no control over and how we felt bad for our bodies never doing what they were supposed to do, despite all the work. Medical professionals have a lot of work to do as well, but as parents and caregivers, your feelings around disability can either work to neutralize or amplify the stigma your child will face in the world.

My first suggestion is to connect with adults who share the same disability as your kid. There are things that you and your kid will learn about living with that disability that you (unless you share the same disability with your kid) just won’t know. For me, when I finally connected to the blind community in my 30s, not only was it helpful to be able to share experiences that I previously thought were my struggles alone, but I also learned about hacks and tools to make my life as a low-vision person in a sighted world a little easier: Shokz headphones that allow you to listen to directions while still being able to hear traffic to safely cross streets; a special harness designed as a more portable car seat for when you need to get a ride with your kid; how to wear a nametag at conferences that lets others know to introduce themselves verbally because you can’t read their nametags.

Why did it take so long for me to make these connections? Because as a kid, my parents thought that I wasn’t disabled enough to benefit from hanging out with other blind kids or blind adults. In fact, they kept me out of the school system to ensure I didn't get placed in special ed. I know they believed that this was the best choice for me, but I have to question how much of this approach was rooted in a deep aversion to and fear of disability.

Four decades later, I know that ableism still runs deep. I’ve been trying to connect my kid to playdates with other low-vision and blind elementary school-aged kids, and I’ve heard from parents that their kids just don’t want to hang out with other disabled kids. It’s heartbreaking these kids have already internalized that disability is uncool and that part of themselves is unlikable. But it gives me hope that just like I did, these kids will eventually find their community and work to heal from the fear of disability that prevents them from accepting and loving this part of themselves.

Anna Zivarts is a low-vision mom and nondriver who was born with the neurological condition nystagmus. Her book, When Driving Is Not an Option: Steering Away From Car-Dependency, will be published by Island Press in 2024. Anna created the #WeekWithoutDriving challenge and directs the Disability Mobility Initiative at Disability Rights Washington. Previously, she led the disabled storytelling project Rooted in Rights, cofounded Time of Day Media, and worked as a storyfinder for the LGBT & HIV/AIDS and Voting Rights projects at the American Civil Liberties Union (ACLU).