In July of 2017, it was my honor to be the keynote speaker at the National Foundation for Ectodermal Dysplasias Conference in Washington, DC. NFED exists to “empower and connect those touched by ectodermal dysplasias through education, support and research.” My friend Josh Sundquist passed along the opportunity from them and I was so glad he did! They were a group with which I was unfamiliar, but the connection I made with them upon my arrival was swift and deep.

I remember that I got to my hotel pretty late and decided to order a drink and a dessert from the bar in the lobby. As I waited, I noticed a group of kids walking in and, to my surprise…they ALL had hands that looked differently than I was used to. I started to get excited and thought to myself, “This is amazing! Should I say something?! What are the odds they would be at MY hotel?!”

Turns out the odds were 100% because I WAS AT THE HOTEL WHERE THE CONFERENCE WAS BEING HELD and totally forgot. *head slap* See, ectodermal dysplasias can affect people in a multitude of ways, but one of the most physically obvious is how it can affect their hands. Instead of having four fingers, oftentimes they have two, looking somewhat claw-like. I remember sharing that story during my talk and everybody laughing and smiling. I learned SO much that weekend and had such a fantastic time gaining new perspectives from kids and adults, families and medical professionals, about physical differences with which I was unfamiliar. What we did share, though, was how those physical differences are perceived by others and how we can navigate a culture that oftentimes views physical differences as weaknesses instead of strengths.

So, when I started seeing social media posts about this new movie on HBO called The Witches and their choice to give Anne Hathaway’s character “scary hands” that look like many of my friends’, I thought of NFED. And my friend Meg Zucker and her boys. And Alex Barone. And it made me angry. And sad.

“It’s a fictional character, Ryan. Relax. It’s not that big of a deal,” you might be thinking.

Let me respond with some of my initial thoughts about why this is so problematic. Honest to God, my first thought was, “You’re telling me that NOT A SINGLE F***ING PERSON INVOLVED IN THIS MOVIE thought that this could be an issue?” Not one person thought, “You know, people actually have hands that look like this and we might be furthering a stereotype that they’re scary by choosing to do this. Maybe we can think of another way to make her scary and evil.” Representation continues to be a problem in Hollywood. Not only on-screen, but BEHIND the scenes, at the tables where decisions are made. In the rooms where writers write. As my friend Nicole Kelly says every chance she gets, “Nothing about us without us.” There MUST be increased involvement with the disability community. There simply must be.

Physical disabilities are not a prop. They are real and they affect real people in ways that you will likely never understand if you don’t have one. My friend Nick Newell posted on Instagram about this and the responses are littered with rude, ignorant comments. Nick’s concern is not so much for himself as he’s developed a thick skin, but his concern is for those who haven’t. Children who have to deal with other rude and ignorant children and their equally as rude and ignorant parents.

While standing in line at my local hardware store not long ago, a boy about 10-years old told me loudly that my arm “is disgusting.” I tried to take in stride and asked if he had questions and he continued to say things like, “No! Your arm is BAD! And GROSS!” His mother did nothing. She stood there, writing her check, not saying a word. When they left, I apologized to those behind me for the awkwardness. Let me say that again… I, THE ONE WHO WAS BEING TOLD THAT MY BODY IS DISGUSTING AND GROSS, WAS APOLOGIZING TO THOSE AROUND ME BECAUSE THE MERE FACT THAT I EXIST CAUSED THE SITUATION. This shit happens to people on a daily basis and just because you don’t see it or experience it doesn’t mean it isn’t true.

So yes, while it’s a fictional character, the effect it can have in real life can be traumatic. I mean, literally the first article I clicked on about the movie says, “… removes the Grand High Witch’s gloves to reveal her 3-fingered hands that look like talons. Her feet just have one long toe each. Ew.” This movie does nothing to help the pervasive thought that different is gross; it worsens it.

Will this movie cause people to think that anybody with hands like hers is a witch? Unlikely. Will it help people to normalize interactions for people when they see someone with hands like hers? Again, unlikely. Is it the end of the world? Obviously not. But, could it and SHOULD it have been avoided? Absolutely.

Bottomline, I believe they made a poor decision and it will likely have more negative effects than positive for people who have ectrodactyly. And that’s a shame. Hollywood needs to do a better job of being mindful of disabled people and involving them at every opportunity. You can read more about my thoughts on this and listen to a podcast where I expand on it here if you are so inclined. I’m hopeful Robert Zemekis and Anne Hathaway and everyone involved with this will learn from the experience and intentionally make better choices going forward.

I would also suggest not watching the movie. The only way Hollywood will listen is if they see their bottomline affected by us, their audience. And hopefully they’ll hear our voices as long as we keep talking about it.