Page 3 of The Sign for Home

You have been waiting forty-five minutes for the Able-Ride to take you to the Abilities Institute to interview the two interpreters. It’s hot outside, and you have to wear your sunglasses because it’s far too bright. Even though the Abilities Institute is only fourteen minutes from your house and your meeting is at 10 a.m., you told the driver that your meeting was at nine so you would get there on time. But still the van is late.

When you first moved in with Brother Birch, your orientation and mobility instructor taught you to walk from your house to the bus stop and stand and wait with your laminated travel card. The travel card explains to strangers that you are DeafBlind and that you need help with things like crossing the street and getting on the right bus. You are also supposed to show the travel card to the driver with the destination written in Magic Marker. This way he knows when to stop the bus and have someone tap you and let you know to get off. The problem was that almost every time you attempted to travel somewhere on your own you got very anxious and made mistakes. Once, you got on the wrong bus. Twice, you got off at the wrong stop because you were impatient. Brother Birch said he was worried about you and also tired of getting calls from ungodly strangers asking him to come get you when you got lost in the dangerous parts of Poughkeepsie. So now you are forbidden from traveling on public transportation alone and, if Molly or Brother Birch aren’t taking you,you have to use Able-Ride if you go anywhere more than two blocks from your house.

Your legs hurt from standing.

Your guide dog, Snap, lies on the ground and rests her chin on your foot.

Sweat pours down your temples.

Smells like cut grass, gasoline, street tar.

When the driver finally arrives twenty minutes later, you sit in the back seat and lean your head against the cool window. During the fourteen-minute drive to the Abilities Institute you think about yesterday. Two of the girls at your Kingdom Hall have started learning sign language. One of the girls, the one who signs a little better and has a wart on the side of her middle finger, asked you “What’s it like to go blind when you’re already deaf?”

You would like to have told her that it’s really really bullshit and you wouldn’t wish it on your worst enemy. Or how you are sick and tired of explaining your disability to girls like her since it’s the only thing they ever notice about you. Or maybe you could have told her she better be careful because Jehovah God will get mad at her for being rude and make her lose her sight as well.

But you didn’t say any of those things. You told the girl that not everyone with Usher syndrome type 1 goes blind the exact same way. Some people might just experience night blindness and tunnel vision, while others might go completely blind. Some people are lucky, some are not. You are not. You’ve had night blindness for as long as you can remember, and your tunnel vision got really bad by the time you were eight. You lost all sight in your right eye by the time you were eleven. That was the first time you actually learned the word and sign forretinitis pigmentosa. RP is the part of Usher 1 that causes the blindness. Then the vision in your left eye got even worse when you were thirteen, and again at fourteen, and again at fifteen. And later, each time you had to relearn how to “see” the world withwhatever vision was left. A doctor once told your mama that you would probably be totally blind by the time you reach thirty.

The wart-finger girl said, “But I saw you reading something last week with a magnifying glass. You’re not really ‘blind.’?”

That’s when you wondered,Have they not been paying attention at all?Have they not noticed that you’ve been using Tactile Sign Language and have a guide dog and a white cane? Did they think you were doing this for attention? You tried not to say something insulting about their intelligence. If you were rude, the girls might refuse to tell you when your Able-Ride arrived or point you to the wrong bathroom or not let you touch their wrists a little longer than was proper.

Rule number one of being a successful DeafBlind person: BE NICE ALL THE TIME. If you don’t want to be stuck standing on a busy street corner or staring at a shelf in a food store wondering if you’ve picked up a can of peaches or a can of beans, then you will need the help of other people sometimes. This means you might need to flirt, seduce, and charm people into being your ally. It’s not smart to tell people to go fuck themselves like you sometimes want to.

Red star.

So, you politely explained to the girl with the wart on her finger that many people think the “blind” part means total darkness, this great black mass of space. That’s not how it is for you. For you, today anyway, when a good light is shining on a piece of paper and the writing is large enough, or maybe you have a magnifying glass, you are able to read with the tunnel vision in your left eye. But if there isn’t enough light or the print is too faint or small, then you’ll just pretend that you can see it and nod your head like you understand.

The other girl changed places with the wart-finger girl and put her hands in yours. The second girl smelled like sweat and a little bit like metal or blood. It was probably just her braces cutting into her gums. But your sinful brain forces you to think of someone else, the person you’re notsupposed to ever think about. Against your will, you recall that first time at the Rose Garden School: the blood, the worry that you hurt her, the warm small body, her scent.

Stop it! Stop it!

Red star!

Because of your undisciplined and sinful mind, you had to ask the sweaty-metal-smelling girl to repeat what she just attempted to sign.

“So that’s great! Sometimes you can see!”

And the explaining continued. To “see” you need the conditions to be perfect: right light, right contrast, not too much movement. And even then you can usually only see parts of something you’re looking at and you have to piece them together in your mind. To capture something in that small remaining area of vision, you also need everything to stay still. But nothing stays still, including your own DeafBlind head.

You dropped a pen on the floor to demonstrate. Gravity has other rules when you have tunnel vision. Nothing ever seems to go straight down. For the sighted person it is obvious where the pen landed. But for you, it is like the pen completely disappeared off the end of the earth.Here there be monsters!You look to the floor and move your head, signing as you go:Can’t see it. Can’t see it. Can’t see it.

There isn’t a clear distinction between the “blind” area of your peripheral vision and what you can see. No. That would be too easy. Your mind samples the shapes and patterns from what’s contained in your vision field and fills in the blind area with all these geometric shapes. Your mind tricks you into thinking you are seeing things you really aren’t seeing. So finding something real gets harder.

Can’t see it. Can’t see it. Can’t see it.

There!

Suddenly the dropped pen appears like magic, but if you move your eyes even a centimeter then the evil magician that lives in your malfunctioning retina makes the dropped pen disappear again. This happens notonly with pens but with books, with words, with your lunch, with the face of your friend. It’s like constantly being Sherlock Holmes in “The Case of the Hidden Visual World.”

The sweaty-metal girl and the wart-finger girl said they understood, but by that point they had grown tired of talking to you. Who knows if they understood anything you told them? They could have been rolling their eyes and telling each other they wished you’d shut up. Despite answering their questions in far too much depth, despite not being rude, despite all your efforts to be the perfect DeafBlind young man, they eventually left you alone in the middle of the room without even a wall nearby to anchor yourself. You were once again like a small piece of useless but pleasant Styrofoam floating in the middle of the Pacific. This is what it’s like to be a DeafBlind man with Usher syndrome type 1. You would probably die without the hearing-sighted to assist you, and sometimes you absolutely hate them for that.

4THE MEETING

“You must be Cyril!”

Clara Shuster, MSW, entered the conference room clutching a stack of files. Her honey-colored hair was swept back with a black velvet headband. A string of real pearls made it clear that she wasn’t doing the shit-paying job for the money.

“Welcome to the Abilities Institute!” Clara gushed in a singsongy voice. “Thanks so much for coming in to meet Arlo!”

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