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Embracing Disability

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Dad picks up on the third ring.

“Hi sweetie,” Mom speaks loudly into the phone even though it’s on speakerphone, but her voice is calm. “We’re broken down on the Grapevine near Smokey the Bear Road.” 

I think back to a few moments ago when she had been “goosing it” on the shoulder, nearly giving my sister a heart attack as she veered closer to the guardrails.

My mother was treating this unforeseen vehicle mishap as a “learning experience” for her two adult daughters: She had outlined the steps of calling Highway Patrol, who told her to call 911, who promptly demanded, “Are there any males over 18 in the vehicle?”

Taken aback by his question, my mother responded, “Only three women.” 

When she ended the call, my sister immediately chided her for her “nonfeminist” answer, to which our mother responded that “sometimes you have to be the innocent, helpless woman and use it to your advantage.”

Mom explained — as we prepared to call Dad and tell him that his family was essentially stranded in 104-degree weather with a broken engine — how some people like to “cushion the blow,” like her friend Christy, but that sometimes it’s better to just come right out and say it. 

After waiting for a tow truck, we were towed to a dealer in Valencia, California, where we found out that the repair shop was booked three weeks out. Our car would not even be touched for at least 18 days, they said.

This is fine. This is why we have insurance. This is part of the learning experience. 

And the learning did not end there. Due to unforeseen circumstances, I was the only traveler eligible to drive the rental car.

And so, as I handed over my shiny four-month-old credit card, went through an “inspection” for a car that may as well have been a spaceship, and signed several official documents, I showed my mother for the first time that I am, in fact, a responsible adult.

Look at me. I’m the adult now, I thought to myself.

While I might be away from home, let me make one thing clear: I am not on vacation. 

This is still my life, in a different location, with a slightly different schedule. 

The word vacation usually refers to taking a break or a sabbatical from work — a period of exemption or reprise from something. As a chronically ill and disabled person, I do not have the ability to vacate my body and the aches and pains that come with it, leave it behind for a weekend in Newport.

Because my illness never takes a vacation, the third day of our trip is planned around my IV infusion schedule. Although my infusion pump and port-o-cath afford me the freedom to be mobile during treatments rather than chained to an IV pole, my pump is subject to its own set of problems to adapt to.

I’ve been working my own schedule around my treatments this way for more than a year now, and my mother and sister don’t do a great job hiding the fact that they are not used to it. 

The vape pen I had bought for the trip because my mother is “allergic” to the smell of marijuana, coupled with my port and IV on full display, meant that my family was made uncomfortable with the curious stares we received.

“Do you ever think that people think you’re, like, a chemo patient?” my sister asked while we were waiting for our mother outside of a sandwich shop. “You know, with the weed and the hat and the port?” 

I thought about this for a second.

I honestly stopped caring what other people thought of me shortly after I moved out of my parent’s house. And I was only wearing a hat because we were going on a boat.

After this comment, though, for the rest of the day, I noticed the stares even more.

I used it to my advantage, finally bold enough to hit my pen in public rather than hiding off in a secluded area.

When people see me sucking on my pen and the ensuing smoke, they inevitably see the port connected to an IV in my very large vacation purse. At this point, the realization that, oh, it’s because she’s sick, has sunk in. They look the other way.

It’s not only my physical illness and disability that comes with me everywhere; it is accompanied by my own mental illness that feeds on my internalized ableism.

The main event of our trip: a Duffy Boat around Newport Harbor with my grandfather for his 84th birthday, with all three generations of Golden Bears present — himself, my mother and me. As my grandfather drove our boat and reminisced with his daughter about the ‘70s in Newport, I spent much of the excursion concentrating on the breathtaking scenery in order to keep from bursting into tears.

I hadn’t wanted to leave my recovering boyfriend home by himself for fear that exactly what is now happening would happen: He has an episode, and I’m not there to help him.

His mother and brother have stepped in, picking him up from our apartment and taking care of him for the rest of the day. Despite knowing he is safe and in good hands, I cannot help but feel guilty that I allowed myself to withdraw from this part of our lives, even for a “vacation.” 

Through many years of therapy, I have learned that this disappointment in myself I feel when I take on the burdens of others is a side effect of internalized ableism. 

As I write this from the 15th-floor balcony of our Newport Marriott hotel room, on the last night of a trip that began as if it were cursed, I carry only hope. Because sometimes, that’s all you have to hold onto.

Chloe Moody writes the Monday column on being a college student with a disability. Contact the opinion desk at [email protected] or follow us on Twitter @dailycalopinion.