I have a mug that says “I’m stumped!” and a t-shirt that says “The bear was faster,” accented with claw marks. Another t-shirt highlights the disabled parking symbol with the tagline: “I’m just in it for the parking.” As an above-knee amputee, I find these hilarious.

Not everyone shares my sense of humor, and I respect that. But for me, humor, language, and empowerment are entangled. And laughing at myself beats ranting about ableism or pretending that my difference doesn’t make a difference (to my students,  colleagues, even strangers).

I make it a practice to laugh in order to short circuit emotional pain, to dispel or diffuse it. I don’t always pull it off, but I have found that I can often use humor as an effective preventative to feeling pain at unkind, embarrassing, or just unwanted attention to my disability.

When I was in graduate school, parking was tight, as it is seems to be at all universities. It was commonly remarked that a university parking permit was merely a license to hunt. I joked one day that people only wanted to have lunch with me because I drove, and they wouldn’t have to give up their parking spaces.

I was able to park after lunch because I had “the parking spot of the goddess,” meaning disabled parking. Back then I still had my right leg, but it was in poor shape due to numerous reconstructive surgeries and terrible arthritis. After that quip, referring to disabled parking as “goddess parking” and my placard as the “goddess tag” became normative among my friends and colleagues, and I continue to use it today.

My spouse Glenn is responsible for our term for what’s left of my right leg following the amputation. I’m told this bit of leg is properly referred to as my “residual limb,” more colloquially called a “stump,” but neither of those appealed to us. Glenn coined “leglet,” which is decidedly more playful.

My friend G’linda shares my joy in sarcasm and my resistance to seeing disabled people as inspiration porn for nondisabled people. G’linda often invokes Bette Midler’s classic song. “It’s you—the wind beneath my wings!” she quips. We laugh, and then she pretends to be worried. “Wait a minute—does that make me the wings above your wind?!”

I loathe meetings (the worst part of being a professor). One of my go-to jokes when discussing committee meetings, council of chairs, faculty affairs, or other meetings I do not wish to attend is to say, “Sorry, I can’t go to that meeting. I only have one leg.” I hold up my index finger and shake my head in fake dismay, reiterating, “Just one,” as though this is a perfectly reasonable justification.

My BFF affectionately refers to my amputation as “the paper cut,” harkening back to a conversation we had years ago about people who tell me that they understand how I feel because their grandfather had an amputation or because they had to have knee surgery to repair a torn ligament\. “Yeah,” she had joked, “I know just how you feel. I once had a paper cut!”

My little brother—now in his 40s, but still my little brother—came up with one of the best lines ever. We were in sight seeing in San Francisco. I was exhausted and clearly having trouble walking. I needed to rest, and I apologized to Mark, my sister-in-law, and niece. Mark looked at me with mock annoyance and said loudly, “Again with the one-leg! Jeez, let it go already.” Several people looked at him, dismayed (obviously not knowing he was my brother and teasing me), and I doubled over with laughter. That’s become a perennial in-joke for my family.

Legendary Saturday Night Live comedian, Gilda Radner, who died from ovarian cancer, wrote, “Cancer is probably the unfunniest thing in the world, but I’m a comedian, and even cancer couldn’t stop me from seeing the humor in what I went through.” Living with cancer’s late effects is also unfunny, but the humor is there, too, and I continue to look for it.

Photo credit: http://addisonyachtcharters.com, via: https://creativecommons.org/licenses/by-sa/4.0/

“Sweetie!” I bellow from the depths of a white plastic laundry hamper where I’m frantically pulling dollar bills from pockets. “I need your ones and fives!” Well used to my pre-conference ritual, my husband dutifully goes through his wallet and yesterday’s pants for $1 and $5 bills and adds them to the growing stack of crumpled bills that I will use as tip money.

Nine days later, I’m back from attending two conferences, flying from California to Ohio, then Colorado, before returning home. As a long-term cancer survivor with late effects, travel costs significantly more for me than it does for most people.

Before I travel, I book (more expensive) direct flights whenever possible to avoid the stress of rushing between connecting flights.

I tip the—almost exclusively minority, typically immigrant—people who help with my bags and wheelchair. I dislike relying on airport wheelchair services, but long lines at security and enormous terminals often make it necessary.

I don’t know hourly wages earned by curbside luggage handlers, wheelchair pushers, courtesy shuttle drivers, and hotel bellhops, but they cannot possibly be lucrative. I’m grateful to have sufficient income that I can afford to be generous to the people who help me, especially since they are almost always resourceful and kind. That said, the tipping really adds up.

In addition, I bring a ton of luggage, and that costs additional fees. And yes, airlines are allowed to charge disabled passengers for all baggage, including medical equipment; the only exemptions are wheelchairs, walkers, and similar mobility devices. I pack travel crutches to use in the morning and evening when I don’t wear my prosthesis. And I lug a travel shower chair because hotels will not promise to meet my needs, only note my “preferences” and “do their best” to accommodate me.

Side note: Most hotels have two categories of rooms—regular and handicapped. You’d think I’d like the handicapped ones with the built-in shower chair, but you’d be wrong. The vast majority of these rooms are designed for people who use wheelchairs and include roll-in showers that unfailingly cause water to spill over the floor, which makes maneuvering on crutches deadly. Add in the inevitable miscommunication between the reservation staff and the front desk, and it’s easier to just get a regular room and bring what I need.

At conferences, I wear myself out going to sessions and so tend to take cabs when others might walk to meet colleagues for dinner. Or else I pay extra for food delivery when I am too exhausted to go out.

It’s not that $100-$200 in tips and fees during a trip is that big a deal. But I am increasingly aware of the ways in which necessary assistance for me costs extra, either through charges or reasonable expectations of tips.

These extra costs matter even more when we consider the pay gap for people for disabilities in the U.S., which exists at every income level. My own employment and educational category—a professor with a Ph.D.—averages over $20K less per year for disabled people. And of course the disability pay gap intersects with pay gaps based on racism, sexism, and other forms of discrimination, further marginalizing vulnerable people.

I don’t have a solution, since I can’t refuse to pay fees, and I don’t want to deny tips to service workers. But it is important to boost public awareness of ways people with disabilities and chronic illnesses incur higher costs and earn lower wages, presenting barriers to our full participation in society.

As with honoring other forms of diversity, fostering full inclusion of disabled people, including cancer survivors with late effects, within our workplaces, transportation systems, and other public spaces will take collective efforts against systemic barriers and ultimately will enrich our communities and institutions. The ADA was vital legislation, but many transportation needs go unmet.

In the meantime, I’m unpacking my jumbo suitcase and allowing small bills to collect on the bottom of my purse for my next trip.