Dim Sum

Not having a working handicapped-accessible restroom is illegal.” I can feel a choking at the base of my throat, right between my collarbones. “It’s illegal.” My voice is getting higher and loud- er and I try to breathe. “Do you understand what I’m saying?”

The woman behind the register rolls her eyes and says something in Chinese to the manager. He says something back and with a wave of his hand, he walks off. The line is getting longer behind me, but I don’t budge.

We had ended up at this dim sum restaurant in Boston’s Chinatown instead of our usual spot, because this restaurant, in an old converted theater, has an elevator and a ramp to the dining room (though I have a hunch the ramps were built for the dim sum carts, not for wheelchairs). The restaurant is bustling—carts weave in and out, steam rises from bamboo steamers, voices and clinking trays echo through the full room. The four of us: Karen in her automatic wheelchair, Karen’s husband Rich in his manual wheelchair, my boyfriend Adam and I are all grinning. I’d been planning to take Rich and Karen to their first dim sum for ages. We roll up to a table and point excitedly at the little carts. I feed Karen dish after little dish, explaining all the contents. “Delicious!” Rich keeps saying as Adam helps him with some slippery noodles. We laugh and chat and I threaten to order chicken feet.

It’s at the end of the meal, after we’ve stuffed ourselves full and are laughing our way toward the entrance that Karen asks if I’ll take her to the bathroom. In addition to being close friends, I worked for Rich and Karen as a Personal Care Assistant—helping Karen do all the things we take for granted: Dressing, email- ing, eating and using the bathroom. Karen and I spent most of my shifts chatting while I worked, and the regularity with which we saw each other meant we knew all the details of each other’s lives. We talked about race, relationships, being happy and why people do the things they do, and I would go home each day with Amazing Karen Stories. Most of them had to do with Karen’s optimism and relentless sense of humor in the face of some pretty disheartening experiences. (PCAs coming to work drunk or late or not at all, being treated like she can’t think or speak just because she is in a wheelchair, her mother dying when she was 11, the same year she found out she would be in a wheelchair for the rest of her life.) Pretty soon I’m giving my friends and family regular Karen updates.

After dim sum, I take Karen to the bathroom and push open the accessible stall. And the stench smacks into me first—the toilet is full of what toilets are full of, it is overflowing; and in a turn-of-events that I find impossible to imagine, feces are smeared on the walls. Karen just laughs.

“Gross! Guess we’ll have to find another one.” She starts to maneuver her chair out the door, but I am still in shock.

“Karen, I can’t just not say something. What if you really had to go?”

“Then I’d just go in my pants. Katrina, things like this happen all the time! And if I got mad every time something like this happened, I’d be mad all the time!

And I don’t want to spend my life angry.”

“Fair enough,” I say.

“And besides, it would be such a hassle.”

Part of Karen’s disability is low voice quality—sometimes her voice sput- ters or halts, sometimes her lips move but sound refuses to come out. It makes it difficult for her to even voice a simple complaint, and this is why, on our way to the elevator, I spin around and march resolutely up to the counter. This is the moment when I find myself yelling at the staff and keeping my friends waiting while I stage a sit-in.

I’m ready to call in the health inspectors and a lawyer and stage a protest, until this dude behind me in line says “Lady, give it a rest, you’re holding me up.” I’m ready to yell at him too, but then I realize: I’m not going to change this situ- ation. I can’t even convince the people in line of this injustice. And so, worn out and embarrassed, I just walk away.

Karen and Rich are waiting downstairs for me. They’re all smiles and Rich teases me, “Look at you! You start working for us and suddenly, you become an activist!”

I don’t feel like an activist. I feel like a failure.

My injustice meter goes off when a rare steak is overcooked. I think about how many times I have made a bratty scene about a phone bill or an unfair bureaucratic process—basically things that inconvenience me—and I imagine a life like Karen and Rich’s when everything is an inconvenience, when an entire city is simply not made for them. Where bus drivers gun it when they see two wheelchairs at the bus stop, where people address me instead of Karen and Rich, assuming they can’t think, where everything takes careful planning and large cushions of time on either end.

Karen manages to let most of it go, and I notice that knowing Karen I let things go a little more, too. I am more direct, more responsible, and I’ve culti- vated an unshakeable gratitude for the smallest things. Mostly they are things that Karen has to depend on other people to do: Brushing her teeth, doing dishes, tidying up; I do these things with joy now, realizing how lucky I am that I can give my body an instruction and it will follow.

But this gratitude doesn’t just come from appreciating my mobility. Karen’s gratitude and enviable patience in the face of irritation is unparalleled by anyone I know, in a wheelchair or out of one. When she’s strapped into the bus and the driver forgets her stop, she says that rather than getting angry, she takes time to think of all she’s grateful for in her life. She lists her husband, and new foods, and her sister, and church, and detective novels on tape, and being able to go on a cruise to Bermuda for her 10th wedding anniversary.

At a dinner party last night, a friend of mine said that he thought quality of life could be measured by people’s capacity to understand and enjoy their lives. And as I launched into my quick-history-of-Rich-and-Karen, I thought of how often we make assumptions about people’s lives based on the ways that they’re different from us. I used to see strangers in wheelchairs and avert my eyes, imagining how horrible their lives must be. But knowing Rich and Karen, I wonder if my capacity to enjoy my life is lessened because I have lived it without a disability.

Katrina Grigg-Saito happily worked for Rich and Karen for reprehensible government wages: $10.84/hour. Katrina lives in Tokyo and is now a TV news producer at NHK. She can be reached at katrina.skirt@gmail.com.

~Katrina Grigg-Saito