I Recorded What People Said To Me About My Daughter's Disabilities For 10 Days
After reading a Romper article where writer Margaret Jacobsen conducted a two-week experiment documenting the racist things people said and did to her, I felt such a kinship with her experience of having to constantly engage with other people’s ignorance. It made me realize how nervous I get when the topic of my 5-year-old daughter, Esmé, comes up in exchanges with strangers. Even the most innocent of inquiries can yield information about my daughter’s disabilities. My daughter has several genetic mutations that result in her being very small for her age and unable to speak or walk (yet!). Sometimes — if her feeding tube is hidden and her unusual movements aren't particularly pronounced — people seem to assume she is a large, sleepy toddler. Questions like, "how old is your daughter?" are secret grenades dropped in conversations by poor unsuspecting strangers. Then, I start to give myself odds on how long it will be before I hear: "Did you know before she was born?" or "So, what’s wrong with her?" or "She's lucky to have you."
It isn’t that these questions are mean-spirited. Most of the time the people who stop to speak with us mean well. However, it can be exhausting to dig into such conversations when all I want to do is sit on a blanket in the sun, my kid playing quietly beside me, whilst sipping my iced Macchiato and reading (OK, so that never actually happens anyway, but whatever). Sometimes I’d rather avoid uttering the words "cardiac arrest" or "feeding tube" or "developmental delay" or "genetic disorder." Sometimes I’d rather avoid hearing everything those words bring into the conversation, including the tropes... no, especially the tropes. I mean, you hear, “Oh, she’s going to be OK, I can tell” once, and you manage a nod and a smile. You hear it 100 times, and you worry about how this will alter your child’s self-esteem. But when you hear it 1,000 times, it gets hard not to respond with: "Oh, fantastic, I’ll let her 20 pediatric specialists know." Or "Um, she is already perfect as she is, thanks." Or "Piss off."
The nature of microaggression is such that a lot of little (or not so little) things can add up to be more than the sum of their parts. So, I decided to spend 10 days recording everything people said to me about my daughter’s disabilities. My relationship with disability isn’t always clear to everyone around me. So, I wondered how this would alter the experiment, especially as I was due to travel for two days without my daughter in order to meet my partner in running a small medical research foundation, Juliann.
Going into the experiment, I promised my editor I could guarantee at least one “God only gives you what you can handle.” Let’s see how I did.
I had high hopes for beginning my experiment today because we were scheduled to make the three-hour drive to Boston for Esmé’s bimonthly doctors’ appointments. Traveling never fails to bring about some pretty awkward exchanges at rest stops. However, Esmé woke up really sick, and we had to cancel the trip. Instead, we spent the better part of the day between our pediatrician’s office and the hospital radiology center dealing with blood draws, chest x-rays, and antibiotic shots. While it was a tough day for Esmé’s health — and a potential game-changer for my travel plans, it was a day without awkward comment.
Thankfully the antibiotic shots kicked in overnight, and Esmé started feeling quite a bit better the next day. And we did catch the full-force judge-y looks that we often attract as I loaded Esmé into the car in the handicap-accessible parking spot. These looks seem to stem from the fact that at a glance Esmé resembles a toddler and her wheelchair looks like a swanky stroller. So, I assume, people think I’m taking advantage somehow.
He said, “God only gives you what you can handle.” And then, in an unmistakably pitying way that suggested we might be contagious, he said, “Well, you ladies have a nice night.”
Since Esmé recovered so well I was able to still leave, as scheduled, that afternoon on my trip to Chicago to meet Juliann. Of course, flights tend to yield super awkward, overly personal conversations, but my seat mate didn’t speak much English, so I spent my flight listening to Beyoncé and writing (which is basically my version of heaven). However, the ride from the airport to my hotel was more promising. I found myself riding with the chattiest Uber driver ever. When my daughter came up in conversation I felt it coming on even before his mouth opened: “God only gives you what you can handle.”
I almost cheered, because with the very first awkward thing said to me during the experiment, I was able to meet my promise to my editor.
After lunch Juliann and I stopped in a Walgreens in downtown Chicago. The cashier chatted with us, kindly complimenting our dresses. We mentioned that we were dressed up since we were having a kid-free weekend. We did not, however, mention that we each have children with disabilities. Handing us our receipt, the cashier said that she understood how important it was to have breaks from kids, saying, “I was just a nanny for a 4-year-old boy with ADHD and violent outbursts. I moved to Florida for this kid because I thought he was just a normal kid. He wasn’t.”
Juliann and I shared a quick glance, and as we turned to walk out I reached into my purse for my notebook, I whispered, "Well, that's going in the article."
It's a dismissive way of suggesting that children with disabilities only wind up with people who are capable of caring for them exceptionally well. And this is absolutely not the case.
That night we had drinks in the hotel lobby when a man stopped to ask what we were in town for. We explained that we run a foundation for medical research for a disorder our daughters share. He said, “God only gives you what you can handle.” And then, in an unmistakably pitying way that suggested we might be contagious, he said, “Well, you ladies have a nice night.” We exploded in giggles as he walked away.
It was another travel day, so I thought I’d take full advantage of the airport this time. I struck up a conversation with a woman in the terminal. She asked me questions about my daughter — not just about her disabilities, but also about her personality. She mentioned wanting her own daughter to know how to interact comfortably with children of different abilities. We spoke at length about disability, about women’s rights, about Black Lives Matter, and about how as humans we have an obligation to stand up against injustice, intolerance, and discrimination of all kinds.
It's true that raising my daughter is difficult, but I just don't want that to be the most remarked upon thing about her — because there's so much more to who she is.
It was lovely, because, frankly, I rarely hear from others about how they are raising their children to be allies to children with disabilities. While people often mention having known someone else with a disability, it's often clear that forming actual friendships with children with disabilities is not something that many parents consider nurturing. Sometimes this is subtle, other times, not so much. Once, immediately following my explanation that Esmé understands everything, our neighbor encouraged her twins, who are a only a couple of months older, to describe their upcoming birthday party to me in front of Esmé. It took me a beat to realize that they had no intention of inviting her, that they didn't consider her a peer who might be hurt by hearing about a party she was excluded from.
I was surprised that he — you know, the professional photographer of children — did not interact with Esmé other than to snap his fingers to get her attention.
This evening after my boxing class I swung by Panera for dinner, and a woman commented on one of my tattoos — a bird on the inside of my arm. She asked a bunch of questions about it. Meanwhile, I just focused on being seen as an individual, not a “special needs mom,” because, frankly, I've realized that this aspect of my identity seems to have become most of what people see when they see me. And, lately, I've been trying to reclaim the other parts of what makes me, you know, me: my boxing, my unbelievable cocktail-mixing skills, my doctorate.
I knew it would be helpful for this piece to mention my daughter to see if the woman would say something weird… and then I was like, Nah, I'm just going to enjoy this moment, thank you very much.
Today we went to take Esmé’s passport photo at one of the kid-focused mall photography studios. Before we got started I told the smiling photographer that Esmé might not make this easy. I explained that she has a movement disorder, that she cannot sit up on her own on the stool, that she doesn’t see well. I felt his demeanor change after I explained this, but he reassured me he’d get the shot. No longer smiling, he was focused and silent. And I was surprised that he — you know, the professional photographer of children — did not interact with Esmé other than to snap his fingers to get her attention. I was too busy trying to safely balance Esmé's wiggling little bottom on top of the stool to bristle much, but I found it was odd since Esmé has a history of enchanting photographers.
I mean, look at her, right? Maybe he was standoffish because he was concentrating? Or perhaps someone told him there was a woman observing the weird ways people react to disabled kids, and then writing about it on the internet?
The responses of other people rarely have anything to do with me, or with Esmé. They do, however, have everything to do with other people’s hang-ups — with their guilt, fear, and inexperience.
At my boxing class this evening, while I was warming up, someone said to me that having a daughter with Esmé’s challenges must have made me stronger. And, you know what? It has. Absolutely.
However, I had to stop and think about it for a minute, because I get frustrated when people tell me, in reference to Esmé, that I am “just stronger” than other people. It feels like the Godless version of “God only gives you what you can handle.” It's a dismissive way of suggesting that children with disabilities only wind up with people who are capable of caring for them exceptionally well. And this is absolutely not the case. Furthermore, perhaps God only gave me what I can handle… but what about Esmé? Why would any infant be “strong enough” to deal with her heart stopping, her seizures, her pain?
My eyes teared up momentarily. After longing to hear my daughter’s voice all these years, I cannot fathom it becoming a nuisance.
But, yes, having a child whose life you regularly and reasonably fear for has a way of making a person stronger… or breaking them.
Or, in my case, both.
Nothing awkward happened today, despite a trip to Target, which is shocking. So I asked a couple of friends to offer me awkward comments about children with disabilities. Neither of these friends have children with disabilities, although one of them is a pediatric nurse, so I was curious what would come to their minds. They quickly came out with the following:
"Aw, is it hard having a daughter like that?"
"I don't know how you deal with it."
"You must be a special kind of person."
And, of course, "God only gives you what you can handle."
I was surprised that they recited some of the most common things people say to me. It made me laugh, at first, and then I felt this overwhelming sadness that so much of what's said about my daughter comes from a pitying script that others repeat in our direction. It's true that raising my daughter is difficult, but I just don't want that to be the most remarked upon thing about her — because there's so much more to who she is.
Today we went to the post office to file Esmé’s passport application. The line was ungodly long — so I struck up a conversation with the woman behind me in line. The woman leaned over to tell Esmé how beautiful she is. I thanked her and explained that Esmé is 5 and half and understands everything, but that she does not speak yet. The woman said, “My daughter spoke late too,” adding quickly, “but she started talking just before she was 2. And she hasn’t shut up since.” My eyes teared up momentarily. After longing to hear my daughter’s voice all these years, I cannot fathom it becoming a nuisance.
Today we were enjoying the sun walking the main street in a nearby town. I stopped to give Esmé water through her feeding tube. Esmé has eaten nothing by mouth since she was 3 months old, so I do often forget that all children don’t come with feeding tubes — at least, I forget until I notice someone staring. While I fussed with Esmé’s tube ,I caught a very pregnant woman watching us. I caught the woman’s eyes and I was, for just one moment, certain I could read her mind: "Did you know before she was born? Tell me you knew before she was born. You must have known... because God only gives you what you can handle, right? Right?"
Then the woman averted her eyes and quickly hurried by us.
What I Learned
So, that was an interesting few days. While I felt like some of the more blatantly rude things I‘ve experienced in the past — the exclusion by other parents, the use of the R-word, the probing personal questions — were not represented over this 10-day experiment, a lot of the most typical day-to-day stuff was. Also, I was pleased to share a few wonderfully positive conversations because I do want other people to know that there are thoughtful and caring ways to engage in conversation about (and with) my daughter.
Looking back on five years of these sorts of conversations about Esmé, I've realized that the responses of other people rarely have anything to do with me, or with Esmé. They do, however, have everything to do with other people’s hang-ups — with their guilt, fear, and inexperience. At times I feel like people expect me to play along and be a mirror for what they want to hear about such things — to assuage their feelings by making it true that we are too different to understand; or that genetic tests warned me of my daughter’s condition before her birth; or that disability only affects those of us who are somehow prepared for it.
But, you see, none of that is true. My relationship with my daughter is quite relatable: I love her and I'd do anything to protect her. I had no idea what was coming when I had my daughter. And I was not at all prepared for it — I’m still not. I’m just making it all up as I go along.
Just like, you know, every other mother ever.