This assignment was supposed to be a fish-out-of-water, visit to another culture type of description. I actually had just been to the PT House, a hotbed in the Deafblind community, a few weeks prior so it was perfect. Even though I am DeafBlind, I did not grow up in the culture and I do not yet have the skills to thrive in the community. But I always enjoy my visits there and I am always grateful to be invited and accepted there when I get the opportunity.
The PT House is famous in my world, and although I had met with individuals from this culture, I had never actually been to the PT House itself. But I was in Monmouth, Oregon for another event and had gotten myself invited to a party there. I had a headache, and I was nervous. I knew communication would be a struggle and I did not feel well, or that my brain was in it’s a-game. Still, curiosity got the best of me, and I was in town. I forced myself to go.
I had set a marker on the address, so as I walked down the street, I knew I was getting close. But my guide dog assertively turned up a driveway toward a house. She had never been there, but she knew I was looking for something and she felt very, very strongly that this is the house we wanted. I was surprised by her absoluteness on this, but then I would find out there were other guide dogs inside, and I swear, guide dogs know the aura of other guide dogs more than even regular dogs. In any case, she was right, it was the right house.
Someone opened the door but there was no sound. Just some shuffling around sounds and a few different currents in the air shifted as people walked by. I sucked in my bravery and signed in my extremely basic ASL and finger spelling, “Hello! My name L-I-S-A, and here (I gesture to my blind husband) partner name N-I-K.”
Did anyone even understand me? Or know I was there or who I was? I didn’t know. I worried about Nik, who was totally blind and knew barely any ASL and although I had taught him to finger spell like 3 or 4 times, he always forgot. The figure in front of us put an arm on my shoulder and started walking. I grabbed Nik’s hand and like a train, we followed her through a pleasant suburban house.
When we got into a sort of open area, she left us and we both stood there, kind of not knowing what to do. There were a lot of people in there and they were all clustered together in small groups. There was almost no sound, but you could hear an occasional vocalization or a deaf accented word or two; sometimes the silence erupted with laughter. Our bearings were further shifted suddenly when my guide dog, who was still next to me on her leash and in harness, was bombarded on all sides by three different dogs. I was thrown a bit off balance, as was she. I reached down and there was just a swarm of soft furry goofiness. One dog was calmer and older. It had the guide dog aura, and its fur was stiffer and thicker. The other two, though they felt like Labradors as well, were moving like young puppies and were soft and floppy. I started laughing and loudly said something like “PT Dog Party!”
This was loud enough to make some of the people aware that new arrivals were among them. All of the sudden, I was surrounded by people who had their hands on my shoulders or who had grabbed my hands. It felt physically overwhelming and my instinct was to recoil a little, but I did not want to practice “distancism,” a word Deafblind folks use to criticize how anti-touch our society is. Even though I am very much a product of that society, I understood their need to touch me was their only way to communicate. I was on their turf and I will do as they do. I took a deep breath and made myself calm down. I signed “wait-minute-wait” and she let me have my hands back. Another person was tugging on my coat, and after a minute I understood that she was inviting me to give her my coat. I slid it off and handed it to her. She reached out to my hand and signed something I could not understand. I guessed through context that it had something to do with where she would put my coat, so I just signed “thank you” into her hand. That seemed to satisfy her and she left me. I could not keep track of what had happened to Nik by this time. I knew he would be a little deer in headlights here, but he could deal. I knew I did not have to babysit him and he would figure something out to communicate with people. He was good that way.
The dogs were all still a bit nutty. I was reaching down to see what was what and someone took my hand and signed something into it that I didn’t get. I didn’t know what to say back so I just was still for a moment. The man took my hand and put it on my dog’s harness. He made a slight tug on it. Ok, he was telling me it was ok to take the harness off and let her run free in the house with the other dogs, which would make things easier for me. I don’t let my dog go free in people’s house unless I get permission. And I decided this was permission. I took her harness off and she and all the other dogs shot off into the darkness. A burst of laughter could be heard as the ball of dogs ran through the clusters of people. The man took my elbow and led me through the room. We stopped and he placed my hand upon the wall, then slid it down to a sort of baseboard that was about 2/3rds down the wall. We were both bent over by this time with our hands on the wall. He guided my hand around where I traced the baseboard around. It made a rectangle about 12 X 18 inches. Then, he picked up my hand and placed it in the center of the rectangle. I felt a plasticky vinyl panel that swung open both ways. I could feel the cold winds of the February air when I pushed it out. “Dog door!” I signed into his hands. He reached for my forearm and patted it, which in ProTactile means, “yes.” Ok, he is showing me that my dog can go outside. I wanted to ask him if outside was fenced, but I couldn’t think of the sign for fence. So I took his palm and fingerspelled F-E-N-C-E and then made a ? sign on his palm. Another pat on my arm. I signed “yes, ok” in his palm.
All this was communication, if not that complex, so I was like…ok. I can do this, but I feel like I am using every brain cell. Every time I moved, another deafblind person would reach forward to me at chest level, looking for my hands. My breasts were being swiped more times at this party than a 1960s stewardess passing out cocktails. But to be fair, I had swiped a few sets of breasts myself accidentally, and no one was yelling “Me, Too!” here. It was all just accepted. It was intimate, but it did not feel sexual in the slightest.
Here, I was the anomaly just like in the regular, sighted hearing world. But the difference was that these folks did not shun me, they dealt with me. The vast majority of Deafblind adults have Ushers syndrome. They were born Deaf and grew up in Deaf culture with ASL, then they started losing their sight in their teens and 20s. They had come together and developed their own language, which they called PT or ProTactile. It was first developed by Jelica Nuccio, a Croatian-born deafblind woman who got tired of deafblind folks having to communicate with each other through ASL interpreters. In Seattle, where she was the head of the Deafblind Services Center, she threw out the “terps” and made everyone figure out how to communicate directly with each other. At first, this was a version of tactile ASL. Over time, the more visible aspects of ASL, like placing a sign in different spaces in the air, became tactile signs. PTASL became a different dialect of ASL. But after two decades, PT has developed into its own language. Jelica owned PT House in Monmouth, where I was. She had designs to develop a Deafblind community of PT communicators in this little town without much traffic and where Deafblind folks could safely walk around. PT House had certain rules: Touching anything was ok, PT reigned supreme, and there was to be no interpreters and distantism. It was a bit of an insular clique. It was the “cool kids” of Deafblindness in the country. Jelica, who had spoken openly against Helen Keller National Center for being an overbearing, patronizing monopoly who paid high salaries and did very little actual programming for their constituents (much like Canada’s CNIB!), wanted the PT folks to take care of their own. Jelica was a legend.
I had known Jelica for over 20 years and I had always admired her. She was charismatic and self-determined and smart. But I was not in the PT clique. I was the rare breed of being born blind then lost my hearing. People like me and the culturally deaf folks got along and were allies, but we did suffer a communication and cultural gap. We had all the great blindness skills, but no ASL or PT. They had all the good tactile communication skills, but sometimes were still baffled by blindness. Jelica had always been kind to me, but I wasn’t “OF” her people exactly. The fact that I got invited to this felt like a bit of a test. I think they wanted to see how I would do without an interpreter and on her terms. I had warned her that I wouldn’t be anywhere close to perfect, but that I would absolutely try my best and not give up.
Now, in her house, I had not given up. But I did sometimes feel like I was drowning. I had part ASL, part PT, part print on palm, part voice/speech conversations with many people. It was ok, but it was hard to get past the simple small talk of when you first meet someone. “My name L-I-S-A, how you how?” I said over and over. “I good, happy here meet you” I signed. Then…it went a little cold. And even that was taking all of my energy. I decided I needed a little break and found the sliding door to an outside deck. I decided I should check on my dog.
I stepped out into the cool winter air with no coat. But it had been so hot inside with all the people in close proximity, it felt good. Dogs came running up around me, and I felt relieved that these particular party guest just expected me to be able to speak dog. Amongst the wiggly fur, I managed to find my dog’s familiar wiggly fur, and she seemed happy. But my reprieve was not for long. A set of soft hands touched my arm. I braced myself for another broken conversation. I turned toward her and fingerspelled my name into her hand. She started printing big block letters on my palm. D-A-N-A. I wasn’t sure why she did print on palm instead of finger spelling, but I had heard that some PT folks reject ASL altogether and only want to do things the totally deafblind way. I just went with it. But then she signed “dog” to me, which was a tactile version of ASL, a snap in my palm, so who knows? She did the snap in my palm again, and I patted her arm. Yes, dog. I understand. Then she took both of her hands and she ran them rapidly all the way up my arm and on my upper chest and down the other side, then she stretched out my arm and made her hands go into a big wiggly pile in that hand. She removed her hands and took one and made it into a claw shape and put it on my shoulder and did kind of a scratchy thing with it, which I knew meant “laugh” in PT. I could tell she actually was laughing. Oh, I get it. She is describing to me how the dogs are running around the yard and ending up in a big pile, which she thought was funny. I wasn’t sure if she was actually seeing or hearing or just imagining this, but it was accurate to what the dogs were probably doing. This was a large backyard by Portland standards, which are mostly postage stamp sized. I only knew what the dogs were doing when they occasionally rushed up to the deck by me and I could feel their claws tapping on the deck and waking up the deck boards with their happy dance. I could imagine it too, and it was funny.
Dana and I eventually got cold (she takes my hands and shivers them back and forth) and went in. I decided to see how Nik was faring, and he had managed to get out his braille display and iphone and was having whole conversations with people like that. He had earbuds in his ears and would use braille screen input on his phone (a way of writing braille with a virtual keyboard) and his words would show up on the braille display which people would read, then they could type back to him on the braille display and he would hear it in his airpods. I decided I could get deeper conversations if I did this, too, but he had my stuff.
It took awhile to get him to give me my stuff and for me to set it up. People there expected that your hands would always be available to talk to them so it could be hard to get a moment to even pair my devices and turn them on. I had an iPad with an external QWERTY keyboard and a braille display. But I could not just listen to what they typed like he did. So I either had to pass the braille display back and forth or see if they would “type blind” on the QWERTY. It seems they were not used to the type of braille display I had, a cheaper one called an Orbit has a bit of a different button configuration. So much time was spent trying to figure out how to teach them which button was backspace and pan and things like that. There were moments when I was using ASL, fingerspelling, print on palm, speech and braille at the same time. My brain about exploded and I could feel the energy being sucked out of me. But eventually, I was able to have a conversation with a few people that way that went beyond “how are you? Good, and you?”
What I always appreciate most about the “capital D-Capital B” DeafBlind community, even when I don’t communicate all that well with them is that they always will engage with you and they never give up. They will try anything and will keep trying. They don’t just cast you aside because communication isn’t easy and within “normal” social rules. They are the epitome of inclusive. I need to take breaks and do parties like these in short bursts until my own PT skills get better. But I hope to return again to PT House.
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