Today I want to talk a bit about sensitivity. I want to write about how sharing the world with other humans requires that we think about how our actions, our words, our postures impact the people around us. This is true of all people, all people are deserving of the thoughtful attention of the people around them…however, as you might have guessed, what I want to discuss is the extra bit of thoughtful sensitivity that is necessary to look out for people with disabilities…and the fatigue involved in constantly having to insist on that extra thoughtfulness.

I often find myself struggling with how I set the boundaries of my expectations of others with respect to Ez. What are appropriate expectations to have of caregivers? of her doctors? of her school district? of her family members? of the children she meets? of the strangers who see her out in the world? What are their obligations to her? How do I walk the line between recognizing and accounting for (and expecting others to recognize and account for) the things that make life a bit harder for Ez and expecting her to be embraced as “just another kid,” as a peer, as a member of society who isn’t actually more important than anyone else?

These are not easy questions. But these questions are ones I grapple with constantly. I find myself constantly saying to André or my mom or a friend, “Is that ok? Um, no. Right? Or am I overreacting?” I had one such experience on Tuesday that so clearly fell into the “not ok” category that after walking away from it, explaining what happened to André, I was still so aghast that all I could say was, “Well, at least I know what my next blog post will be about!”

Dear reader, let me set the stage:

On Tuesday we took Esmé for a trip through Vermont. We had several things in mind to do, but among them was a visit to the Ben and Jerry’s ice cream factory. I’ve always wanted to go. Ez has been showing some interest in eating ice cream by mouth. And Ezzy eating anything is, honestly, reason enough to go just about anywhere. So we went. I waited in the crazy long line in the ridiculous heat to order super yummy ice cream, while André pushed Ezzy’s red wheelchair around the whole place–stopping to get tickets for the factory tour inside.

So far so good.

When we settle in a shady spot on the patio, we each offer Ezzy tastes of our ice cream over and over. And over and over she pushes them away, crying pitifully with the little bit of chocolate on her trembling lips. So we shift gears, quickly devouring our rapidly melting ice cream ourselves and then move inside to gather at the designated tour starting time. We wait for approximately 30 seconds before hearing Ez vocalize in the unmistakeable sound that lets us know that a trip to the bathroom in order. André and I look at each other with that “Uh-oh” expression. I think about her portable potty in the back of our car down the hill.

“I’ll take her to the bathroom,” I say “Hopefully she can use the restroom here. If not, we will have to head to the car.” Ez can use a regular toilet, but it isn’t always easy on her or me. So with a hopeful glance back at André she and I and her wheelchair head to the bathroom line. Any parent in the world would have recognized the look on my face, crying wiggling kid in my arms, too much stuff hanging off her chair, trying to navigate a bathroom that is just barely accessible. There are a handful of kids in line ahead of us. A little girl, perhaps 10 or 11 years old, gets in line behind us and her mother is directly behind her. By the time Ez and I are first in line Ezzy is in my arms panicking, but the next bathroom to open up is a regular stall–in which we absolutely do not fit. So, I turn to the little girl behind me and say, “You can go ahead, sweetheart,” then nodding toward the accessible stall next to me, I say, “I need to wait for this one.”

So, the girl walks along to the stall that has just been vacated by another little girl, and steps in. She immediately backs out, concerned look on her face, and says, “Mom, come here.” An exchange between the two commences across the bathroom in which it is established that the stall isn’t totally clean. While the the conversation is going on, I am relieved to hear a flush come from the accessible stall. I start to shift Ezzy’s weight and her chair around so I can get her frustrated flailing little body into the stall quickly.

The mother behind me has still not gone over to her daughter who is paused nervously in the doorway of the stall, but she says, “Ok, well, you may just need to go into another stall.” And then as the person vacated the accessible stall and I’m about to step in, the mother stretches her arm in front of me and says to her daughter and starts to wave her daughter in before us, “Here, just go in that one.”

Wait, what?!

I’m going to pause here to discuss this. Even if she was clueless enough to not see that I am holding a child with a disability and pushing a wheelchair (e.i. exactly who this stall is there to serve), and thinks instead that Ez is a baby, this is the only stall with a changing table. It is also the only stall that I can fit in. I also clearly communicated that this was what we were waiting for. Her daughter was behind me in line. I allowed her to pass in front of me specifically because we needed the accessible stall. And my daughter in a younger child in a rage of panic because she needs to use the bathroom…Even the daughter seemed to hesitate looking back at her mom like, “really, cuz…um…”

Right at that moment I felt completely invisible…or perhaps it is fairer to say that I felt as if the mother were trying to make us invisible, actively ignoring the needs of others in order to fill her own needs only marginally faster all while not needing to go into the moderately dirty stall to flush the toilet properly for her daughter and wipe some pee off the seat (because that was what the problem was, after all). I know the look she had, the look of trying to ignore the inconvenience we pose to the world around us. It is the partner of the exasperated look she gave me as I tried to maneuver in the small, crowded bathroom. I see it on some drivers faces when it takes us a bit longer to cross in the crosswalk. Or on some shoppers faces when Esmé blocks the way in her gait trainer…when we take up too much space or move too slowly or need a bit of extra attention. When we ask for accommodation. Not every time. Not all the time–but more often than seems right.

And like many things that happen over and over to a person, often the question isn’t so much the single isolated incident of being wronged, or overlooked, or treated as less than, or being made invisible–so much as it is the whole thrust of the reality of it. It is the weight of minor infringement after minor infringement…of having to be the one, who as my friend Channing put it earlier this week, whose job it is to regularly “tell people firmly but nicely not to be assholes” because my kid’s needs might otherwise be overlooked in a world that is harsh, and particularly so for those of us who lack strong voices of their own–or whose voices are regularly crowded by the din of “me” and “mine.”

In the end I did not, as the polite self-sacrificing side of me might have liked, shrink back and allow it to happen. I also did not, as the snarky voice in my head did, say, “Of course, I’m SO sorry that my upset disabled child and I have gotten in the way of you doing whatever the hell you want to do all the time…”

Instead, I turned toward her, my heart racing just a little bit, and said, as I’ve had to say before, “Um, no. Absolutely not.”

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