I grew up in Abbeville, Louisiana where it is muggy all-year-around. My eyeglasses would fog up the second I got out of the car or any time I left the house. That is how humid it is in the Deep South.
My parents learned that I was deaf when I was four months old. They decided that American Sign Language (ASL) would be the most natural way for me to communicate with them. What would be the hardest for them would be the easiest for me. They were not only determined to learn ASL but to communicate in ASL at all times.
I grew up with two older hearing sisters who, I thought, were rather glamorous. They were blonde. I was brunette. Deaf and with Usher Syndrome. When I was ten years old, I was thrilled to learn that we were going to have a baby sister. I somehow instinctively knew she was going to be Deaf. Like me. I shared my excitement with my mother and she didn’t think it would be possible. What are the chances of having another deaf child? she thought. Regardless, I had to prove to my mother that my baby sister was, indeed, Deaf. One day I found an opportunity when my baby sister, Jenee, was sleeping in her crib and I decided to crank up the radio. My mother immediately ran in the room, signing: “you are going to wake up the baby!” I told my mother: “Look! Look at Jenee!” There she was sleeping peacefully. “Deaf! Just like me! I told you!” My mother wept and was heartbroken. I was confused and deeply hurt.
My father, who was always my hero, came in to comfort my mother. My father didn’t share the same perception that my mother did. I don’t think he ever saw me as disabled. He just saw me as his daughter. I always felt adored by my dad.
I learned later on how difficult it was for my parents to have me enrolled in Louisiana School for the Deaf which was an hour and a half away which meant I would come home on the weekends. My mother simply didn’t want to go through it again with my baby sister, Jenee. Little did my mother know at the time how much I loved life at the Louisiana School for the Deaf especially staying in the dormitory.
Fast forward 15 years later, I graduated from Gallaudet University with a Master’s degree in Social Work. I returned to my Alma Mater, serving Louisiana School for the Deaf for seven years. I started as a Behavioral Specialist and worked my way up to be the School Counselor and then as a teacher.
Over the years my communication modes gradually changed from visual ASL to close vision to tracking and tactile. When I started using tactile full time, my identify shifted from culturally Deaf to culturally DeafBlind. I admit I Iost my confidence and self-esteem when my vision deteriorated even more in my late 30s. I knew it was time for me to undergo DeafBlind training to obtain life tools on how I could live independently.
After months of research, I found Tactile Communications, a non-profit organization founded by DeafBlind with all DeafBlind staff and located in Seattle, Washington State. My first thought was: How was I going to fly solo?! The night before my flight, I could not sleep. My nerves were all shot. I was sincerely afraid to step out of my comfort zone. The flight from Baton Rouge had one stop in Denver where I had to change planes to get to Seattle. I had to learn how to communicate with the airport staff, using the Notes App on my iPhone for writing back and forth. I was amazed how I managed…. just fine. It was the first thing that I had done totally on my own with literally no support from my family and friends. From that point on, I made a commitment to maintain my independence as much as I could. My confidence and self-esteem depended on my autonomy.
During the two-month training in Seattle I never imagined I’d grow this much. It was truly a soul-searching time for me. I met so many DeafBlind individuals who felt confident about their identity. Even adults need role models! It was an eye-opening experience. Just meeting other people like myself helped me to know that I would be more than just OK.
I was introduced to Protactile. This philosophy is somewhat new and is growing rapidly within the DeafBlind community. Protactile is all about how DeafBlind people live and communicate within their culture using touch. Instead of a visual concept like American Sign Language, Protactile is a reciprocal language using four hands to touch and exchange information. I did not realize how powerful and informative touch can be and how important it is for me to become comfortable with the constant physical contact that Protactile requires. Vision loss varies greatly and there are many different degrees. Regardless how much or how little we can see; touch is our world. In the DeafBlind world, we use contact space instead of air space.
To explain the difference between air space and contact space a bit here - Deaf people can see as they communicate in a visual way such as pointing in different directions, shifting your body from side to side so others see direction and placement of signs. Hence, air space. For DeafBlind using constant physical contact through sign language, it’s called contact space.
When you sign FLY, you are creating movement in the air (air space). In my world, you touch my hands and start signing by creating points (tapping) on my wrist to inner elbow to shoulder. Let’s say you flew from Florida to San Diego where you had a layover in Houston in between. You would sign: (touching my wrist): Flew out from Jacksonville, Florida > (your index finger traveling from the wrist to my inner elbow): Stopped in Houston > (again, your index finger traveling from the inner elbow to my shoulder): Arrived in San Diego.
If you were to sign: “Walk down the hall, turn right at the very end” using air space, it might become lost in translation for me. However, if you were to draw on my palm using your index finger, how to get to the bathroom from where we are standing, this would make more sense to me. This is known as mapping.
In the Deaf/Sighted world, facial expressions are visible. When we see others’ reactions or responses, this is called back channeling but when you are DeafBlind, you’re unable to observe how others are reacting or responding. For instance, when someone talks to you, you look at them and you may be nodding your head. I cannot see whether you are nodding or shaking your head. How do you backchannel with a DeafBlind person like me? Touch! You tap me with your knuckles on my upper arm when I sign to let me know you are following me. Otherwise, I will assume you’ve stopped listening. We have many kinds of touch that are placed on the upper arm for all kinds of backchanneling: how to express inflections while using the word: Yes and No and how to indicate emotions from laughing to being surprised.
Using Protactile is truly a blessing for me as a DeafBlind person. Communication instantly becomes rich – a linguistically rich language. Communicating in ASL with my hands is called Tactile ASL which only gives me information on what a person is saying. Tactile ASL does not give me the rest of the information that others get. Using Protactile would let me know all kinds of things that are happening in my surroundings: a person exiting the room, descriptions of a new person(s) entering the room, how the room is set up, what is displayed on the screen/board, et cetera.
Using Protactile makes it possible for people like me to get full information, simultaneously and instantly. Protactile is rapidly growing and evolving. It is for everyone and anybody can use Protactile including Deaf, Hard of Hearing, and hearing people. It is all 100% inclusive. And, I love that!
Happiness is being independent,
Nicole Alleman
