I’m Not Sorry If My Disability Makes You Uncomfortable

Photo of a woman in a blue jumpsuit standing at a podium on stage, speaking. She is looking up at the lights.

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.


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

Anna Zivarts joins the Rooted in Rights team from Time of Day Media, a digital media firm she co-founded in 2010. At Time of Day, Anna produced digital video for the Innocence Project and Fight for 15, and lead searches for the ACLU in Kansas and Wisconsin to find citizens disenfranchised by voter ID laws. Twitter: @annabikes

2 responses to “I’m Not Sorry If My Disability Makes You Uncomfortable

  1. I LOVE the message that this Momwith a disabiyis offering, in an effort to empower other parents of children with disabilities, but I am profoundly bothered when I see documents or speeches written by folks who are trying to advocate about & for people with disabilities while using language that isn’t “person first.” I ask you & everyone, as a parent of two adult children with disabilities and as a professional who works on behalf of older adults and people with disabilities, PLEASE use person first language!!!

    1. Many disabled people prefer identity-first language (e.g., black person, white person, disabled person, gay person, straight person, autistic person, neurotypical person, deaf person, hearing person, blind person, sighted person), even though sometimes that makes their parents or caregivers uncomfortable. And many people with disabilities prefer person-first language (person with blindness, person with gayness, person with straightness, person with autism, person with neurotypicality, person with deafness, person with hearing). The proper thing to do is to find out what a person prefers to be called, and call them that.

      https://autisticadvocacy.org/about-asan/identity-first-language/

      https://news.northeastern.edu/2018/07/12/unpacking-the-debate-over-person-first-vs-identity-first-language-in-the-autism-community/

Leave a Reply

Your email address will not be published. Required fields are marked *