I’m 24 years old, and I look perfectly healthy from the outside. But I have an invisible disability, Ehlers-Danlos Syndrome, an inherited connective tissue disorder. It means walking and standing are painful and difficult.
Keeping my balance is tricky, and I have a hard time holding on to a moving train’s handrail without falling over. That means I desperately need that subway seat you’re sitting in, even though I don’t look like I do.
When I do have to stand on the T, it is like something out of one of those old slapstick routines. I’ve kicked over a man’s grocery bag, tripped on a stroller, and even once touched (okay, kind of grabbed) an elderly woman’s butt. None of them laughed, though they did accept my embarrassed apologies. And on a more serious note, because of my connective tissue disorder, if I do stumble and fall, I’m prone to breaks, dislocations, and other injuries.
I never used to feel comfortable asking for a seat. I look a few years younger than I am, and most people aren’t willing to give their seat up for someone who appears like a healthy high school or college student.
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Eight months ago I started using a cane daily because my condition is progressing. I’m also using the T more frequently for work, professional events, and my social life. The cane is bright purple and glittery, and I’m almost always offered a seat as soon as passengers notice it.
It shouldn’t be this difficult to get a seat on the T, especially for riders who don’t have an obvious mobility aid like my cane. While there’s no data on invisible disabilities, according to the Centers for Disease Control, nearly one in five Americans has a disability. And more than half of those who have trouble walking or climbing stairs don’t use a mobility aid like a wheelchair, cane, crutches, or walker.
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Boston should learn from London’s public transit agency, Transport for London. Last fall, it unveiled a test program, in which 1,000 transit riders with invisible disabilities were given round blue badges to wear, bearing the simple message “Please offer me a seat.” The badges were discreet — they didn’t blare “I am disabled.” These test riders were also given small blue cards that read, “Please offer me a seat. Remember not all disabilities and conditions are visible,” which they could show to people who asked about their buttons.
London’s trial was a success — participants felt that 72 percent of their journeys were easier as a result of the badge, 86 percent felt more comfortable asking for a seat, and 98 percent would recommend the badge to someone who needs it. On April 28, London rolled out a permanent version of the “Please Offer Me a Seat” program.
Transport for London made this move because it wants to ensure that public transit works well for all its riders. Boston should want the same.
Of course, plenty of T riders would make room or stand up for someone with a visible mobility problem, or for an elderly person. But not everyone has an obvious disability. The badge program helps make things obvious. Badge wearers do still face the problem of getting commuters to look up from their iPhones.
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There are already signs on every train indicating priority seating for the elderly and passengers with disabilities, and many trains have additional signs and audio reminders to offer your seat if you see someone who needs it. The MBTA would have to amp up its rider outreach and education. And there would still be the problem of rush hour trains packed so full someone like me would have trouble getting close enough to a seat to ask for it.
The T has higher profile problems, including the commuter rail’s issues with disabled trains and railcars. But a badge program would be an easy fix — inexpensive and it would make a huge difference.
Alaina Leary is an editor and book publicist in Quincy.