Invisible on the Subway: RA & Public Transportation

Invisible on the Subway: RA & Public Transportation

I’ve been back in New York for almost a month now (I got back June 3rd) after a two-week trip home to Minneapolis in May due to my inability to find housing in Brooklyn for the rest of the month. Crazy! But that’s another story. What’s also crazy and frustrating and exhausting being back in NYC is getting used to public transportation again, especially the vast and often unreliable subway system. The subway is great and is a big help with getting around places, especially when you don’t have a car (like I did in Minneapolis). But what’s not so great about the subway is that the trains and stations are usually jam-packed with people, especially during rush hour. There’s also a lot of walking, stair-climbing, and waiting required (usually that means standing), which has proven to be one of the biggest physical challenges I’ve experienced so far living in New York with RA.

More often than not, when I step onto a crowded train I scan the car and see that there are no seats available. I then try to carefully maneuver my way further inside with the hope of finding a pole I can hang onto to steady and support myself for the duration of the ride. Usually before I’ve even gotten on the train, my feet and bad ankle are throbbing and in pain from all of the walking I’ve been doing anyway. Standing on a crowded train for a few stops is bearable, but longer than that can become agonizing. Sometimes there’s not even enough room to shift your weight from one foot to the other, or lift up the “bad one” to take the pressure off it. So you’re stuck standing there, with bodies squashed against you from every angle, as you try to not think about the stabbing pain burning in your swollen feet and ankles.

There are signs on every subway train that read, “Priority seating for persons with disabilities” above the two-person seats at the ends of each train. There are also signs that run across the top of the train next to the advertisements that say, “Offer your seat to an elderly, disabled, or pregnant person. Even better, add a smile.” This is all very considerate and necessary however I doubt I’d be met with a “smile” if I were to ask someone to let me sit down. There have been times when I’ve been tempted and my ankle pain has been verging on horrific. But I’m way too intimidated and chicken, really, to actually attempt to ask someone to give up his or her seat for me. Part of me is curious to see what the response would be, though. Surprise? Scorn? Annoyance? A flat-out “NO?” Insults? I’m still feeling too fragile and new here to attempt it right now and my goal of the day is usually to just get from point A to B without additional drama or problems.

However. I hate to say it and label myself as such, but I am a “disabled” person in many respects. I have chronic RA pain, which is often unpredictable and unforgiving in its assault on my body. And more specifically, I have a very painful and swollen right ankle and foot that’s in a constant state of some degree of a flare-up. Being forced to stand for any period of time is even more painful than walking on it. The main challenge with this “disability” situation on the subway is that I don’t LOOK disabled, of course. The “Invisible Illness Problem” strikes again. I look young and healthy and “normal” on the outside even if I’m silently suffering.

So what do I do, just grit my teeth and deal with it? I can’t afford to take cabs or car services, and I’ve run into similar problems of having to stand on some of the buses here. I’ve joked a few times to a couple of RA friends about this transportation problem, saying that maybe I should step onto a train wearing my Minnesota disability parking permit hanging around my neck. Or get one of those walking boots that looks like you’re recovering from surgery (I have two of them at home in Minneapolis, actually). I don’t know what the solution is yet, but you can be sure that whenever I do see a free seat on the subway or a bus, I make a mad dash for it and then hope that nobody shoots me dirty looks and guilt-trips me into giving it up.

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Comments

View Comments (4)
  • Anita
    3 years ago

    In my earlier years of having RA, I used to have problems like this. I would also get attitude from people when I parked in handicapped parking spots. People would look at me and see a young person who looked healthy and would comment or challenge me on my right to park there. It didn’t help that there had been a few articles written by some wheelchair-bound people who encouraged people to confront people they felt were healthy. It was kind of a wheeled vs. walking wounded scenario, which was annoying, since we get enough grief from healthy people without fighting amongst ourselves.

    Public transit is a difficult challenge, though. Many buses and subway trains here in the Boston area are retrofitted to handle wheelchairs and scooters, along with handicap seating, but it isn’t perfect, especially since it’s the oldest transit in the country and simply wasn’t designed to be accessible. Other patrons get angry at the extra time required for a bus to “kneel” or for the portable ramps to be unlocked and moved into place. I’ve had people demand I give up my seat even when I’m sitting there holding my cane. It was worse before I had “props” like a cane or a boot (that does help a lot).

    Even if you have a wheelchair or scooter, there’s usually no way you’ll fit on the train or bus during rush hour. There are simply too many people packed in like sardines. The handi-van services usually only cover areas not serviced by regular public transit, so we end up stuck in between. Some people say to just use transit outside of busy times, but that’s unfair. We have jobs and lives like everyone else, so we should be able to live on our own schedule.

  • jj
    3 years ago

    Having the same problem in Philadelphia, just a little less crowded. The commute exhausts me before getting to work!

  • Carla Kienast
    3 years ago

    Hi Angela: We don’t have a wealth of public transportation in Dallas, I run into the same problem on travels to other cities. When traveling, I always carry a folding cane with me and on occasions when I need it, I dig out the cane and use it to get on the subway car with it. Since my disability is now “visible”, I don’t mind asking for a seat. (Although people are a bit more polite about those things in London than they are in New York.)

  • Connie Rifenburg
    3 years ago

    It is true about the invisibility factor of RA. It must be more frustrating to be young and youthful looking to others and yet bearing the same pain of those of us older RA sufferers.

    I have long used a cane. At first, I was embarrassed. I didn’t want others to defer to me. I just needed it to steady myself when my knee or ankle would suddenly get weak. But now, I am feeling the same way about a walker. I’ve had to “upgrade” to that ‘elderly’ label more and more as the cane wears on my one wrist.

    I tried the adage “well, whatever gets you through the day” attitude to soothe my ego, and recently, I found the funniest set of “tennis shoe slides” to put on the walker where you normally see those ugly tennis balls! What a riot, and when I must use that walker, at least I get a funny comment or look…and laugh along with them.

    I lived in Mpls for 10 yrs and used their bus system. It was wonderful to get around! Where I live in FL, our transportation system is terrible!! But! Uber. Anyone heard of Uber? It is the best thing since smart phones. Read about it online. I am just about to give up my car full time due to eye issues, and Uber arrived at just the right time.

    I wish you best of luck on the Subway dear Angela, but never be too “proud” to use a cane (and some that even have a small seat attached) when you are suffering. No one’s opinion of you is worth the pain you suffer at not using the label “disabled”. You have the ability to use those seats, access, respect, based on the many years of suffering by others who didn’t have the Disability act in place. They pushed so that you COULD have that seat. Don’t abuse it, but use it.

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