“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.