Page 61 of The Sign for Home

“Looks like we have a convert,” Zach signed.

“Always happens,” Mindy added. “The DeafBlind are fucking incredible people. Well, not all, but most of the DB peeps we work with are off-the-charts brilliant. Tabitha, of course, is in a realm all by herself. Get ready to be dazzled. Speaking of which…”

Mindy pointed across the room to an attractive woman with wavy long blond hair holding a white cane and being led by a swarthy “hot daddy” type, who turned out to be her sighted-hearing husband. When Tabitha reached the stage, I saw her pull out a load of top-level, brand-new equipment, including a communication device that looked generations newer than Arlo’s old SBC. She also had something that looked like a small label-making machine that she attached to her iPhone. It allowed any words that appeared on the phone’s screen to be instantly translated into braille.

“My client back home doesn’t have any of that equipment,” I signed with frustration. “Except some really old-looking SBC. He doesn’t even have a cell phone.”

Zach and Mindy looked at each other and shook their heads.

“No iPhone? Seriously?” Mindy asked. “Can he read and write?”

“Yeah,” I signed.

Liz, the CDI who had been watching our signed conversation from a few yards away, suddenly walked over.

“What the fuck?” Liz signed and spoke at the same time. “Your consumer definitely should have an iPhone and a braille reader. How the fuck does he communicate when he’s out of range of a computer?”

I suddenly felt ganged up on, like they were blaming me for Arlo not having the newest and best equipment.

“Actually, I just started working with him in June,” I signed. “Is it possible the case manager is just really clueless?”

Mindy and Zach shook their heads, puzzled, while Liz looked outraged.

“Bullshit,” Liz signed. “In my opinion somebody in Poughkeepsie is either lazy as fuck or they just don’t want your client to have access for some reason.”

“Well,” Mindy signed, trying to move the conversation back to the task at hand, and to a more positive note, “I guess this is the reason Tabitha’s going around the country doing these talks. And with that, the show is about to start. Let’s go meet Tabitha and get set up. Oh, heads up, Tabitha will want you to do Protactile with her.”

“Wait… what?” My stomach heaved with a wave of nerves. “I can’t, I barely know—”

“Relax,” Mindy signed. “You’re aren’t expected to know Protactile for the presentation. Just when you talk to her privately. Follow her lead.”

My heart was pounding as we introduced ourselves. Tabitha’s name-sign was the sign forshinybut made from the corner of her crystalline blue eyes, which were slightly askew like Arlo’s. She was even more beautiful up close. When Tabitha signed to me she insisted that instead of me just using my eyes to watch her as I did with any Deaf or DeafBlindperson, I was to keep my hands on hers while she signed, as if I were DeafBlind as well. Tabitha sensed my nervousness and told me I was doing great, promising not to bite “yet,” and broke out in a charming, boisterous laugh that instantly put me at ease. Then Tabitha went over the parameters of how she liked her interpreters to work and used my chest as the physical representation of the stage. Suddenly, I too was experiencing the back-channeling, the nodding fist on my chest, the tapping hand, the grabbing laughter on my upper arm. At certain moments she used my forearm or hand as the base for a few of her signs the Protactile way. It was incredible, but the close proximity and constant touch made it harder to see what she was signing, so I had to partially depend on feeling to clarify the words.

“You will get it. Don’t worry. Just watch my regulars,” Tabitha signed, winking. “Wow! Those three: champs!”

Five minutes later the lecture began. Liz and I sat on chairs to the side of the stage while Zach and Mindy took the first twenty-minute turn. I couldn’t take my eyes off them. Mindy was definitely one of the best interpreters I’d ever seen—a hundred times better than I was—and Zach was working at Tabitha’s back like a puppeteer on amphetamines. All three together looked like they were performing some outrageous modern dance. Zach’s hands drew squares, circles, and lines. His fingers swished up and across her shoulder blades. I understood that he was describing the room, the people asking questions, their facial expressions and location in the room. Tabitha was totally engaged in the question-and-answer session, clearly knowing where the person asking the question was standing. Her answers and reactions were a perfect fit to the mood of the audience. Mindy was incredible, and I noticed how for certain signs that the terp would normally put on their own body, Mindy was using Tabitha’s body to make the sign just as Tabitha had done with me. When an audience member told the story of an accident that involved climbing a tree, Mindy,instead of using her own forearm to make the sign for tree, used Tabitha’s and thus Tabitha got tofeelthe person climbing the trunk (her forearm) and then falling from the branches (her fingers).

A Deaf-sighted audience member raised their hand, and asked nervously, “When they do all that Haptic stuff on your back, doesn’t it distract you from what your regular interpreter is signing to you?”

“That’s a fair question,” Tabitha answered via Mindy’s voicing. “Did that person who just walked by you to go to the bathroom distract you? I know you look surprised right now. My interpreter just showed me both the person walking across the front of the room to head toward the bathroom and the look on your face. Did that person’s move cause you to lose concentration? Does the hum of the air conditioner, or the hundred people in the room, or the smell of the chicken parmigiana waiting in the dining room next door? Okay, maybe that is distracting me. I’m hungry. But seriously, sighted-hearing people get a massive amount of information into their eyes and ears every second. So they pay attention to it or ignore it. Now, of course, some DeafBlind don’t like touch signals at all. But me? I want to devour every single aspect of life. I want it all. That’s one of the main things about Protactile. It’s about our right to access. Our right to be part of the world.”

Before I knew it, it was my turn to take over the Tactile interpreting with Liz doing the Haptics on Tabitha’s back. I was incredibly nervous, but also excited. When I voiced for Tabitha, my tone lightened. It wasn’t an imitation of a woman, but I was trying to express Tabitha’s specific kind of charm. Tabitha told how her parents, who knew she had Usher syndrome 1, hid the fact that she might go blind until she was nearly twenty. When she found out, she was furious.

“If only I knew earlier,” she signed, “I would have looked at everything more deeply. I would have taken it all in… everything. I would have eaten life with my eyes. But I missed so much… the GrandCanyon, Hawaii, Paris. The hearing-sighted often try to control our access to the world. Either like my parents did, by not telling me I was going blind, or the way our government does by not giving all DeafBlind free access to SSPs or requiring that all parents of Deaf and DeafBlind babies learn sign language immediately, so they have a common language with their child. In my opinion, without mandated access, the world is being stolen from us.”

Then a middle-aged hearing man with a salt-and-pepper beard raised his hand. He identified himself as a writer and ASL interpreter from New York. He was writing something about deaf-blindness and wanted to know how Protactile had affected Tabitha’s life.

Tabitha took an extra-deep breath.

“My night blindness started in my teens, but as recently as two years ago my vision was still good enough to drive,” she explained. “And any day of the week I was doing twenty things at once. Traveling around the country, going to conferences and Deaf advocacy groups, swimming, running. My husband called me the Tasmanian devil of multitasking. But then, almost overnight, my vision got so bad I was designated legally blind. Then it got worse. I couldn’t go to Bloomingdale’s on my own anymore. I couldn’t take dance class or go to the museum without help. Forget about chatting for hours with friends on the videophone. I had lost so many things that made my life meaningful.”

Tabitha wiped a tear from her cheek, then gathered herself and smiled.

“I know what you’re probably thinking: Tabitha, you work in the field of disability. You know lots of DeafBlind who can do lots of things independently. Yes. True. But they weren’tme. I sunk into the worst depression of my life, and I wasn’t sure I was going to be able to get out of it. I would wake up every morning, see the dark fog in front of my eyes, and remember I was blind. Then I’d run to the toilet and vomit. I hate saying this, but, for the first time in my life, I wanted to die. Then one day, six months after my depression started, my husband and a DeafBlind mentor of minestaged an intervention and basically bawled me out. They said, ‘Tabitha, this isn’t who you are. You’re a strong woman. You can’t just sit around with nothing to do.’ And they were right. So, despite my depression, I finally went back to work. And the next thing I knew, my supervisor at the Bridgman Center sent me on that trip to Seattle where I met those two awesome DeafBlind women who taught me about Protactile. And let me tell you, it was like the great DeafBlind God in the sky reached down and lifted the chains from my soul. The Protactile way of life made me feel like I was brought back to Earth. I was back inside the room again. Here. With you, and you, and you.”

Tabitha pointed to different places in the room that Liz had previously described via touch signals on her back.

“With the three women sitting in the front row, with the one on the right wearing a frilly salmon-colored blouse, and you, the handsome man who I’m told looks a little like George Clooney, who is nodding his head as I speak, and… are your eyes tearing up? Mine too. Protactile put me back into life again… and I need it. I need it so badly. I also need my interpreters and my SSPs—some places are calling them co-navigators now. Whatever you call them, they let me know what’s happening in the environment around me. I can be independent and still need other people to get access to information. Everyone, sighted-hearing, able-bodied or not—we all use tools to live. That’s why the ADA law needs to be amended so every DeafBlind person can have access to the world, including orientation and mobility training, Protactile training, and the right to co-navigator services every week. Access must be considered a human right. We’re not going to get these things overnight. But like the wise person who taught me how to navigate the world with a cane once said, ‘You swing right, you swing left, you steer clear of obstacles, and one step at a time you can make your way across a continent.’?”

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