Marooned in Manyunk

My friend and I took the train out to Manyunk. If this was NYC or Chicago, a trip like that would be a simple ride on the subway or L. But this is Philly, and that means taking SEPTA's Regional Rail train.

We stood in a long line to buy our tickets, and then had to jump out to make our train on time. I had a disabled fare ticket, but my friend was charged extra for buying his ticket on the train. "You know if you'd bought this as the station, you'd have saved money." Oh yes, we knew.

We sat and talked, and I let my friend keep track of the stops because I couldn't see the map or the display that posts the stops, and the conductor was little bit mumbly. Then my friend said, "This is Manyunk," and we hopped off the train...but it wasn't Manyunk! So we pried the door to the train open and got back on. By now we were getting to be good friends with the conductor.

Something like that is actually less likely to happen when I take public transit alone. I work harder to know where I am andin this post and also in this other post, that can be a lot of work. It's so much work, that I'll gladly give it up to someone who can see to tell me where I am. But yeah, even the sighted make mistakes sometimes.
, as I've written

We're Getting Where?

The motto for Philly's public transit system, "SEPTA, we're getting there," has most riders rolling their eyes. And even any sighted person who's tried to transfer between lines at City Hall knows how bad SEPTA's signage is. Imagine what it's like when you can't see. SEPTA is required to put up Braille signage to help blind folks find their way. I spotted this one on a column at 13th Street, formerly known as Juniper Station. This tiny plaque was on just one—and only one—of about 50 columns in the station, and the odds of a blind person ever stumbling across it are far lower than 1 in 50. I doubt that anyone who'd actually benefit from this sign has ever found it. So I looked around for others.

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This one's placement is good: right at the edge of a wall where folks disembark from the trolleys. But its text is confusing—remember, the station was renamed "13th Street", so blind visitors to the city would be very confused to read this plaque that says Juniper Station.

And then there was this one:

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I.D. Expired

The MBTA's 5-year pass for the visually impaired sure comes in handy whenever I visit Boston. And I now know the sound the machine makes once that pass has expired. I also know that, despite the signs posted at Back Bay Station, that the office to get a new card has moved to Downtown Crossing. A lovely walk across Copley Square, the Public Garden and Boston Common took me there. They gave me a number, and then a new card.

See you in 5 years.

Double Dissed

I just spent a few days with laryngitis. At its worst, I couldn't speak at all, and so I went out with a stack of index cards and a Sharpie in my pocket. Whenever someone said "hi" to me, I held up the first card, which read, "I have laryngitis." If they wanted to converse more, I could write notes on the index cards.

It was interesting navigating the world with two disabilities, one chronic that I keep less visible (having low vision) and one temporary that I chose to make visible (not being able to speak). And once we broke the ice, laryngitis had its perks. People found communicating with me to be interesting and entertaining, and I played this up, making it into something of a performance. In the park, someone offered to buy me sorbet, and then the guy selling it refused to take any money for it. When "talking" to my friend who works with visually impaired people, I wrote on a card, "We're all temporarily abled," and then she told me that this laryngitis might be more of an ability than a disability for me because I could take my time to say what I wanted to say, draw pictures, and then have a record of that correspondence.

On the way home from my night out as a laryngite, I gave out some of these cards to people, odd anthropoetic documents of my conversations with others. When the trolley reached my stop, I rang the bell, but the driver shut the doors before I could get off. I called out, "Rear door!" but he couldn't hear me because at the end of the day, I had no voice.

Three visually impaired people walk into an ice cream parlor…

Tonight the person behind the counter read the flavors off to an 8-year-old girl and a man with a white cane. They didn't know each other, but both had strabismus (eyes that turn out from each other). The man bought the girl a milkshake and then a cup of ice cream for himself. I sat with him, introduced myself and told him I had low vision too but don't use a cane. He explained that in his home country of Argentina, people who are completely blind use white canes and people who are visually impaired but have some vision use green canes so that others know to ask, "How much can you see?" Argentina passed their Ley del Bastón Verde ("Green Cane Law") in 2002. Why not do the same in the US? It would help visibilize we the in-between, las personas con baja visión, or people with low vision.

Pity Me, Mitsubishi

Any one who's heard this piece about car dealerships knows that they need to make a monthly quota, and at the end of each month the salespeople go bananas trying to sell their cars. So with three days left in February, I got the call. She asked for me by name and tried to sell me a car. "Where'd you get my number?" She told me it was through Capitol One, a credit card company that sends me all kinds of junk mail. I cut to the chase: "Do you know that I'm blind?"

It was a ridiculous question and a somewhat extreme way to phrase it. I'm not completely blind, just blind enough that I should never be driving a car anywhere ever. And of course she didn't know that I'm blind, or else she wouldn't be calling me to try to sell me a car. But this isn't the first time this dealership has called me, and I've told them this before and asked them to take my name out of their database.

The most intense part was her reaction. How do you respond when you call someone, assuming that they can drive (and that they can see) and then suddenly, SHAZAM—they're blind! "Oh, I'm so sorry," she moaned. From her perspective, it was a great tragedy—I'd lost my vision in a matter of seconds and it was all her fault. If only she hadn't called. Now I felt bad too. "That's okay," I said, "Now will you please take me out of your database?"

People with disabilities do not live in a constant state of tragedy, nor do we want anyone's pity. Unless we are provoked. Then yes, do apologize, but only if you can back that apology up with action, i.e.: take all of us off your mailing lists. At least until the self-driving cars are ready to roll.

Stand Clear of the (Closing) Doors, Please

Today in Manhattan, the Uptown ① Train announced all of its stops. The Downtown Ⓐ said none. I tell you, riding the MTA without missing your stop can be a gamble when you're visually impaired.

Another gamble was getting into the PS163 where my friend was teaching dance. All doors are exits, but only one is an entrance, and nowadays a grown man walking around school grounds trying door after door looks sketchy as hell. Had I done the glasses-and-cane act, no problem—everybody wants to help the blind man. But even those who don't show up that way might still have trouble finding the sign that might be there saying, "ENTER HERE" so instead I just stand snowblind outside, waiting till 2:45 when all the kids are gone and safe from weird men fumbling around in the snow.

Visible Man, Invisible Man

Today in the train station an Amtrak employee asked a guy with a walker what he wanted from the store—which brand of water he preferred, how salty he liked his pretzels, and so on. Three minutes later she was back with the stuff. He and I were about the same age, but exhibited the visibility of our disabilities differedly: he with walker, I with no black glasses nor white cane.

I'd bought my ticket over the phone to get the visually impaired discount. They always ask if I need assistance, and I say that I don't, even though I can't see the timetable and have trouble finding my track. On the occasions that I have requested assistance, the folks doing the assisting act upon assumptions of extreme incapacity. In airports they just put any person with a disability in a wheelchair and get someone else to roll them to the gate to avoid any mobility mishaps. In a way it's nice to be taken care of, but summary treatment of anyone with a disability can be de-personalizing. 

So when I'm asked, "Will you need assistance?" I have to choose between anonymity and bumbling my way toward the gate, or visibly getting pushed around in a wheelchair with white cane and black glasses in tow. Today I choose to be left alone. Will I choose to be over-assisted tomorrow?

Give Me an Answer or Give Me a Ride

Today I bought a train ticket. It's a for a trip that I've known about for quite a while, and I also know other people who are going that way at the same time. I've asked them about carpooling and have been waiting for an answer. Meanwhile train fares were increasing, so I just bought a train ticket in case no ride comes through. And if one of the drivers ends up saying that they want to carpool, I can cancel my train ticket, but Amtrak will keep 10% of what I paid on top of what I end up chipping in for gas and tolls. At this point, will a carpool save me money?

It's understandable to have plans hanging in the balance—it happens to me all the time. And also, I'm often at the mercy of people who can drive. I forever feel like a kid in this respect: children are un-abled in many ways through social and physical constraints, and learning to drive is a rite of passage into the ableness of adulthood. Not having that ableness can feel like being trapped in childhood, and every friend with the ability to drive plays the parental role of choosing to offer a ride or not. But this space in between—this maybe—has set me back before. 

Blinded by the Light (of a low-vision assistive device)

Taxi in NYC. Screen in backseat shines so bright, speaks so loud. Driver says he can't turn it off. Screen says its for people like me: we who are visually impaired. But  the screen itself is damaging my vision, even though I know the fare.

Blind Song #5: Un-avoiding Björk

One of the people who came to all three sessions of Blind Games this weekend sent us this musical number from the 2000 film Dancer in the Dark. The first time I saw that film, I sobbed my brains out and then spent two days in bed recovering. No joke.

As a kid whose parents debated whether or not to have a child for risk of passing an eye disease onto him (me), my reaction was a personal one: Björk plays a woman who's losing her vision and trying to raise funds to save her own son from going blind. She faces oppression at every turn—for being disabled, for being a woman, for being an artist, for being an immigrant, for being a single mom, and she also has these lapses into an illusory world that are on one hand a decay of mental health, and on the other hand a fantastic alternate reality filled with color, music and dancing.

I have rarely felt as mortified as I did at the end of Dancer in the Dark when all of Björk's hardships come to a head. It's one of my favorite films and I've avoided it ever since seeing it. Here's to facing fear:

A Fare Race

Today we took the train out to Germantown to perform in somebody's home. A couple of audience members texted and called to say that their bus was running late. Why didn't they just take the commuter train? It's faster, more reliable, and doesn't have to contend with traffic. It's also more expensive, and although this might not be the reason that these folks chose the bus, many people do choose slower transit options to save money. I don't take that into account for myself because public transit is half price for visually impaired people. So if a blind person and a sighted person each pays SEPTA the same fare to get from central Philly to Germantown, the blind person will get there first.

All I Can See is IKEA

I don't get on buses by myself. Only the subway has stops that are clearly marked. Maybe.

But today I took a bus to Red Hook to go to my friend's dance rehearsal. I was resistant because I sometimes I miss my stop, and sometimes I miss the bus altogether. But I went anyway to overcome these anxieties. She texted me directions—so many directions, so many options. I could either take the IKEA shuttle, which would overshoot my destination by a couple blocks, or the B61, which winds around Red Hook making all the stops en route to IKEA. I ended up boarding the B61 and tracked its progress on my phone, sure that I'd get off close to where I needed to go. And then suddenly, everyone was disembarking and I saw the unmistakable blue and yellow edifice of IKEA. If only Brooklyn's streets were half as well marked as that.