Anna Zivarts

This is a preview for our #ParentingWithoutPity event at Town Hall Seattle, which will take place on June 13 at 7:30pm. Tickets and directions on the Town Hall website. 

I want to start by not apologizing. At a recent film festival event, I gave an intro to the program. My husband was in the audience that night, and was taking photos. He told me after that it was impossible to get a good photo of me because I was either looking at my notes, or straight up into the lights.

A younger version of myself would have been horrified at this. I spent the first 30 years of my life doing everything I could to not let people know I couldn’t see things. I ordered the same things at the fast food restaurant, I got dropped off a block away so nobody knew that my parents were driving me, I didn’t follow my dream to study medicine or be a scientist. That last one really stings, even now.

I remember the first day in my stats class at Stanford, I couldn’t see the overhead, even from the front row of the big lecture hall, and so I went up to the professor and asked for his notes. He said no, and told me I had to go to the Disability Center on campus to put in a request. I went, and they assigned me a notetaker – meaning that someone would go to a stats class (later I found out it was a class taught by an entirely different professor), take notes, and then a day or two later drop off a photocopy of them at the Disability Center office where I could pick them up and try to interpret them. Unsurprisingly, this wasn’t terribly helpful. For the first time in my life, I started failing a class. I dropped the class, and gave up my dream of being pre-med, or studying anything in a scientific field. I didn’t know I could go back and ask for more help, I was too ashamed of my lack of vision, and frankly, even though it was 2001, I didn’t even know the ADA existed.

Later in college, in an art class, I did a project about disability pride. I was so excited about the project – it felt so daring, so transgressive. But despite our campus being right across the bay from Berkeley and all the incredible disability activism that was centered there, no one in my circle helped me make that connection. And so I went back into the closet, so to speak, and spent the next 10 years trying to hide my disability.

It wasn’t until my son was born that I had a moment of reckoning. When he was diagnosed with the same eye condition, I had a breakdown. All the years of faking and concealing and trying harder to make up the difference, I just didn’t want that for him. And the only way I was going to break that cycle was to own my disability. To be public and proud and to be able to ask for the accommodations I need.

I wish my mom had known other adults with nystagmus. I wish I had known other disabled people growing up. I wish I had found the disabled activist community in college.

Parenting Without Pity came from that desire to allow disabled parents to share our knowledge – to really help inform and educate the parents of disabled children. Because we all want the best for our kids, but sometimes we just don’t know where to look, especially if our kids come into this world with a different body or mind than we’re adjusted to.

So I am not apologizing for looking at the lights tonight. It’s what my eyes do. If it makes you uncomfortable, I’m not sorry. I’d like to challenge you to re-examine this discomfort, or frankly any discomfort you get listening and watching our panel of experts tonight. Because if you’re a parent of a disabled child, you will be challenged. Of course, it’s your kid, you’re the parent. But sometimes it’s important to recognize that other people may know something about the way your kid experiences the world, and that if you listen, you can learn from us.

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When I was born, the doctors told my parents I was blind. That was the first line of my college application essay and the narrative starting point of my life. My parents took me to the doctor because my eyes were moving and jiggling, much more than most babies eyes do. They diagnosed me with nystagmus, and told my parents I would likely never read or lead a “normal” life.

My mother took that as a challenge and, as the doctors prescribed in that era, spent countless hours doing vision therapy with me – trying to get me to look at and track brightly colored objects. My first word was “eyes.” I can’t remember a time I didn’t know that I couldn’t see normally – or a time when I didn’t pretend to be able to see things I couldn’t, both to please those around me, and to pass as fully-sighted.

My mother, of course, wanted me to overcome my disability and did everything in her power to achieve that goal. Rather than having me placed in special ed – “you weren’t special ed” – she homeschooled me until middle school. To her credit, I excelled academically. I graduated from Stanford. My “normal-ness” was a testament to her willpower.

But this emphasis on “overcoming” had its costs. I still fight back tears when I have to tell someone I can’t see something – like the cashier at a fast food restaurant who I ask to read the wall menu for me.

Immediately after college, I moved to New York City. The subway made it easy to not tell people I couldn’t drive, or that there was anything different with my vision. Keeping it a secret backfired when people who eventually got to know me well realized that I wasn’t actually stuck up, I just couldn’t recognize them when they’d wave at me across the street. But when in the course of a more casual friendship or work relationship was I supposed to mention I can’t see? As I worked hard to build my video production company, I never wanted clients to think of me as less capable.

Everyone says what you value changes when you have kids. But when my son was born, I was convinced that wouldn’t apply to me.

“He’s so perfect,” my mother declared, looking into his steady, blue eyes.

Three months later, she came back to visit. As soon as I handed her my son she noticed: “His eyes are moving. Babies eyes shouldn’t move this much.” So the next day when the city had nearly ground to a standstill in twelve inches of thick wet snow, we took him to my eye doctor.

I cried for a day. Then as my feelings began to sort themselves and I realized I was not crying because he was disabled. I was crying because of the emotional pain and shame I associated with my own disability.

I believe the beautiful spectrum of our human ability enriches our culture and society. I believe that “disability” is a construction of faulty design, design that isn’t creative enough to fit the needs of those of us labeled as disabled. A built environment too driven by the free market to be inclusive.

This is the frame for disability that I want my son to internalize. I don’t want to fix him. I don’t want him to be “normal.” I want him to able to declare with pride that he can’t see something when he can’t see it. His difference will help shape and define him. It is his gift to the world, just as it has been for me.

Having him enter my life is what has allowed me to begin my own process of healing and growth, a process that has lead me to seek out the disability justice movement. I am both thrilled and so honored to be able to help build this movement as the new Program Director for the Rooted in Rights team!

Click here to pitch a blog post to Rooted in Rights.