Loving, cool, star-struck, a little melancholy. Check, check, check, check. Sounds like my kid. But there was something missing.
“Do you wish there was an emoji for Down syndrome?” I texted.
“Yes,” she texted back.
“What would a Down syndrome emoji look like?”
Me, either, I thought, putting down my phone.
On Monday, as part of its IOS 13.2 release, Apple released 398 new emoji, including a sloth, a flamingo, buttered waffles — and several disability-related symbols, including images of people with different skin tones in wheelchairs, a prosthetic leg, a blind person with a probing cane, a service dog and a hearing aid.
Disability advocates are cheering. I’m not thrilled.
As both the mother of a child with a disability and a journalist who covers disability-related issues, I have trained myself to look past labels to consider individuals. Just as the blue-and-white international “handicapped” symbol falls far short of including all people with disabilities, so does this handful of emoji.
Furthermore, I spent a recent summer revising the style guide for the National Center on Disability and Journalism, housed at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University. I know how hateful certain words can be — and how tough it can be to find the right ones.
Emoji are such a quick read. How easy it will be to use a wheelchair emoji to tell someone, “You’re so lame!” or ask with a hearing aid image, “Are you deaf?!”
If you are wondering if anyone would really use disability emoji to make slurs, search #retarded on Twitter. It’s not pretty out there.
And then there’s Sophie. Intellectual disability is tough to illustrate. Some genetic conditions, such as Down syndrome, do have shared physical tendencies, so I supposed it could be possible to make an emoji of a person with Down syndrome. But would you want to?
When Sophie was a little girl, I thought there should be an American Girl doll with Down syndrome. Now that she’s almost grown up, I’m not so sure anymore. Yes, Down syndrome is a huge part of my daughter’s identity. As my husband, Ray, likes to say, Sophie is our own little science experiment — every single cell in her body is different, thanks to that extra 21st chromosome, some more than others. But it’s not the only thing that makes her Sophie.
I’m often surprised when I meet another person with Down syndrome by how similar Sophie is to them in appearance and mannerisms, but I also note how much she looks and acts like Ray, her sister and me.
I have mixed feelings about these forms of mass representation — but mostly, I’m worried. I spoke with several scholars who work in the field of disability studies, including Rosemarie Garland Thomson, a professor of English and bioethics at Emory University.
Garland Thomson is excited about the disability emoji; because of a congenital disability, she has limited use of her hands and relies a lot on emoji to communicate.
“I think it’s very important that the embodied experience of people with disabilities be represented in this significant new form of communication,” she said. “That’s important for the goal in social media of representing diversity. I think it’s quite interesting to see how the designers met the challenge of representing such a wide diversity of ways of being the world with just a few images. And also to see how emojis themselves have evolved from really kind of Hello-Kitty-silly-smiley-face gestures of communication to a much more robust and complex form of an iconic language.”
Garland Thomson did warn about what she called “the limits of representation,” noting that, for example, the people in the emoji wheelchairs don’t look like her.
“I have very unusual arms,” she said. “Other people with disabilities have unusual, maybe non-standard forms of embodiment that are not captured with these iconographic figures who are basically non-disabled-looking but using the markers of disability like the wheelchair.”
As for depicting a person with an intellectual disability, she agreed that it’s complicated.
“I would imagine that if there were an emblem for Down syndrome then it could very quickly stand in for the R-word as an insult,” she said. “But on the other hand, if somebody like Sophie wanted to use it as a form of identifying herself, that would be a really positive thing.”
Next, I called my friend Lisa Lilienthal, a communications strategist for Dialogue, an agency based in Atlanta. She lives in Sacramento with her husband and kids, including a teenage son with Down syndrome and a daughter who has mental health struggles. Lilienthal uses a wheelchair.
She said she likes the idea of having an emoji with blond hair and a wheelchair — like her. And while she understands my concerns about how emoji will ever really represent our kids, she gently suggested that I might be a little too worked up over all this.
“You see my wheelchair first, but that’s not what I see,” she said. “This gets into a deeper conversation about identity that I think is a lot of pressure to put on the emoji system. At the end of the day, it’s little pictograms, so let’s not take it too seriously.”
I also reached out to Jeremy Burge, the self-described chief emoji officer at Emojipedia, a blog that tracks emoji creation and use. Burge sits on the international nonprofit Unicode Consortium, which approved the disability emoji.
“I personally had some concerns about the ability for any new emoji to be used in an insulting way,” he told me via email. “It’s tough, but in practice I have heard from far more Emojipedia users requesting emojis to represent a broader range of people, with people in wheelchairs in particular being a common request.”
Burge said he’d never seen a request for an emoji depicting Down syndrome.
“I have seen various suggestions for intellectual disabilities, but rarely with a commonly understood way to represent them,” he said.
Colin Johnson, a spokesman for Apple, didn’t say much on the record about any of it, although he did respond via email that “yes, we’d be supportive of ways to further reflect inclusion — be that ASD, Down syndrome, IDD, other hidden disabilities, or other varying abilities.”
Beyond that, he referred to the 2018 proposal that led to the adoption of the disability emoji, which reads, in part:
“At Apple, we believe that technology should be accessible to everyone and should provide an experience that serves individual needs. Adding emoji emblematic to users’ life experiences helps foster a diverse culture that is inclusive of disability. Emoji are a universal language and a powerful tool for communication, as well as a form of self-expression, and can be used not only to represent one’s own personal experience, but also to show support for a loved one.”
The day after Sophie and I texted, I asked her on the drive to school, “Have you come up with an idea for an emoji that represents Down syndrome?”
“How about one to represent you?”
She paused for a minute to think.
“Piglet!” she said.
The A.A. Milne character is Sophie’s favorite. She looks for him every time we visit Disneyland, and has always slept with a stuffed Piglet a friend gave us when Sophie was born.
Piglet is the smallest character in the Hundred Acre Woods (except for Kanga’s baby, Roo, who is not full-grown and therefore doesn’t count) and he’s considered to have a big heart. Because of his short stature, he has to work harder to get ahead.
“That sounds about right,” I told Sophie. “I like it.”
Sophie smiled and turned back to her phone, content.
Amy Silverman is a freelance writer, editor and teacher in Phoenix. She worked for the alt-weekly New Times for 25 years and has published work in the New York Times, Lenny Letter, Salon and on the radio show “This American Life.” Her book, “My Heart Can’t Even Believe It: A Story of Science, Love and Down Syndrome,” was published by Woodbine House in 2016.