Áine Pennello is a multimedia journalist and visual storyteller. She has worked with The New York Times, MSNBC, NBC’s TODAY.com, Vice, and PBS News Hour.
New etiquette campaigns aim to lessen the stresses of commuting with chronic health conditions that may not be immediately visible to fellow riders.
When Liz Jackson crowds on to a subway car during rush hour, she insists that she needs a seat.
“Somebody looks at my face, they realize I'm young and healthy looking and they just sort of say, ‘No, there's no seat available,’” says the 34-year-old New Yorker.
Jackson suffers from a neurological disorder with symptoms similar to multiple sclerosis. It leaves her constantly tired and run down, she says, “like a weak battery.” Even though Jackson has a cane and an uneven gait, few people spot either of these when she gets onto a packed subway car. It’s only when she insists that she needs a seat that passengers look down to see her purple cane. “I don’t think I would ever ask for a seat without it,” says Jackson. “I have something that validates my ask.”
But others dealing with chronic pain, fatigue, dizziness, or other health issues may not have any visible symptoms or an assistive device such as a cane or wheelchair, rendering their condition “invisible.” While there’s no centralized data on how many people live with an invisible illness or disability, Census Bureau records show that more than 50 percent of disabled Americans who have difficulty walking or climbing stairs—15.4 million people—do not use a wheelchair, cane, walker, or crutches to help with their mobility.
“When we think of disability on the public transportation system, we're really thinking about wheelchairs and people who can't see,” says Elizabeth DePoy, a professor of disability studies and social work at the University of Maine. “When you look at a disability sign, you see a wheelchair, you see a cane, you see an ear, and you see an eye. There's nothing that says or stipulates policy for anybody else.”
That’s why Transport for London (TfL) is trying something new this spring. The agency will issue badges with the message, “Please offer me a seat.” Intended to be worn by passengers with invisible conditions, the badges aim to encourage others to offer up their seats to fellow commuters who may not ‘look’ disabled.
“Most people know that there are invisible conditions out there,” says David McNeill, TfL’s director of public affairs and stakeholder engagement, and one of the driving forces behind the badge. “You don’t need to ask why someone needs a seat. You just need to key into people’s natural politeness.”
According to McNeill, participants who wore the badge in a trial program in October 2016 were seven times more likely to be offered a seat than those who did not. In TfL’s summary report of the trial run, which included more than 1200 participants, 75 percent felt more comfortable asking for a seat when they needed one, and 86 percent felt more confident on their travels while wearing the badge.
According to McNeill, the program’s price tag isn’t as burdensome as one might think. Modeled after the ‘Baby on Board’ badge for pregnant women, the new badge will cost approximately a quarter of a million pounds. Although a senior press officer for TfL was not able to say how many badges the agency hopes to produce at that price, McNeill said the overall cost was “hardly anything” for an agency with an annual budget of £11 billion, or $13.7 billion USD.
Back in the United States, public transportation systems have been slow to launch programs that go beyond simply raising awareness. In 2015, the metro system in Washington, D.C., installed signs encouraging passengers to keep disabled seating open, with one such ad declaring, “Who needs this seat? You’d be surprised.”
In other cities, support for passengers with invisible conditions is less, well, visible.
Kevin Ortiz, spokesperson for New York City’s Metropolitan Transit Authority (MTA), writes in an email, “We don’t have any campaigns specific to people with disabilities that cannot be seen.”
But MTA employees are instructed to help those with invisible illnesses, if they ask for it. “If a customer makes the bus operator aware that they have a disability and asks for a seat, the bus operator is instructed to make a request to customers in the ‘additional’ priority seating area,” writes Ortiz.
But for some people, that gets into one of the most difficult parts of having a condition that can’t be seen: vocalizing one’s own disability and asking for help.
“It’s not a process that a lot of people will willingly go through,” says Jackson, referring to the awkward ‘May I have your seat?’ ask. “They’re fearful of a 'no,’ or of being shamed or stigmatized for just having a need.”
It’s a process Jackson eventually got used to, thanks to a stylish purple cane and the support of her friends, who would sometimes ask for a seat on her behalf when she first lost partial function in her right leg in 2012. Now founder of the Inclusive Fashion & Design Collective, she’s become accustomed to bringing attention to her disability.
But for those without a cane, getting a seat is that much harder. And taking a seat, especially one marked ‘priority,’ poses its own set of challenges.
“I am often given dirty looks or asked to move,” says Thalia Mostow Bruehl, a 33-year-old writer and chronic pain patient living in Chicago. Although she’s spoken up for herself in the past, she often finds it easier to get up or sit elsewhere on the bus than explain the long medical history that’s caused her leg muscles to spasm when she stands. “I don’t think that I’m a shy person but there is something about being on public transportation that makes me be less confrontational,” says Mostow Brueh. That’s especially true when she has her two-year-old daughter in tow.
Then there are those for whom disabled seating—or any seating—doesn’t work. Stephen Gilson, 66, had to get his hip fused after a cross-country skiing incident left him unable to sit with his leg bent at a 90-degree angle.
“People see me with my leg sitting out in the middle of the aisle, and they think I’m just being a jerk,” says Gilson. “That I’m there to trick people or that I’m not being thoughtful about public space.”
It’s this combination of judgment and discomfort that caused Jackson to come up with NYC Seat Share, a potential plan to put the onus of accessibility on able-bodied passengers. Instead of asking people with invisible conditions to wear a badge to signal their needs to others, those who are willing to give up their seat—no questions asked—signal their willingness with a colorful brooch. And instead of asking for a seat, those in search of one could say “nice badge,” a secret shorthand to the wearer. “It becomes this sort of gritty, underground grassroots thing that really opens the door for needs getting met,” says Jackson.
Although she’s lined up a design firm to make the brooch and has talked about the idea with New York City’s Mayor’s Office for People with Disabilities, the idea is still in the pipeline while Jackson searches for a sponsor who can help foot the bill for producing the badges.
Her plan is to charge one to two dollars per brooch, but therein lies another consideration: how many people who don’t need a seat would actively participate? Similar attempts to show solidarity—such as the anti-hate safety pins worn earlier this year—have been mocked for being ineffective or reductive, which Jackson says gave her some reservations. Instead, she envisions the brooch as “the next level of Livestrong,” the yellow silicone wristband Nike began producing in the early 2000s in conjunction with the Livestrong Foundation, a non-profit that helps cancer survivors. Unlike the Livestrong wristband, the NYC Seat Share badge brings the wearer and the recipient together, Jackson explains.
For her, it’s an important step toward making life with an invisible condition a little bit easier—one that comes from within the community and encourages support from allies. “This isn’t about making invisible visible,” says Jackson. “This is about making invisible accessible.”