Just a few days ago I had the chance to meet up with an old college buddy of mine from Gallaudet in Boston, what a relief it was to find him after a lot of dead-end searches. Alex is a Deaf sighted guy whom I had met through my sophomore-year roommate and we hit it off, became close friends – even had several road trips and hockey games together. Needless to say, I had developed a cute, little crush on him. Continued our friendship after he left Gallaudet… but it didn’t fare well soon after for me and Alex. Main reason? Communication barrier where I had difficulty understanding his signing due to Usher Syndrome. Whenever he would sign, as cool as he may be, his signing was stretched out, spelling sloppy, and to add to that, he was over 6 feet tall!
In 2003, my vision had deteroriated to the point where I could only understand fragments of a signed conversation from a distance, and even if I didn’t understand 80% of the conversation I would hide my shame and say I understood everything just fine. I had no idea, no clue how to improve my receptive communication and in turn, friends like Alex and others were frustrated with having to repeat excessively or having topics drop off the face of the earth because I had no basis to continue the discussions due to missing large sections of the topic.
I was going through a very difficult time with trying to cope with my blindness, trying to maintain my “Deaf sighted” identity. My main worry was that if I conceded and told the world that I was indeed Deaf and Blind, I would be shunned by the Deaf community, left alone in isolation, demoted or laid off from jobs in the future. I had NO role model growing up, whom had Usher’s and would guide me to the DeafBlind community and teach me how to be more confident, more comfortable with my blindness. After visiting Alex in Boston in 2003, I was left with more questions unanswered and building frustration from not being able to understand Alex’s signing. So, soon after, I researched methods of communication for the Deaf Blind and found that tactile was not only for the fully blind who use sign language, but for the legally blind who were struggling to see at night or in such close person to person proximity.
I applied for a six week course at the Helen Keller Center in Toronto, Canada the following summer of 2004, registered for tactile instruction, cooking with a blindfold, touring the city with a cane, advancing my Braille readability and introducing myself to the DeafBlind community there. It was a turning point in my life, and I am forever grateful to the CHKC for giving me the chance to live again.
I remember several times when I was at dimmed bars in DC pre-tactile *before 2004* and I would just stand by the bar while people would come and say hello and sign something in the context of six or ten sentences, and I would only be able to catch two or three letters. They would give me funny looks, and ask me if I understood. Signs that were in front of the face were easier to catch, but not the ones below the perimeter below the face. I would nod my head, and say “That’s cool. Umm. Enjoy yourself?”. These people would roll their eyes, pat me on the back and leave. I would down more and more drinks out of boredom and hopefully time would pass. Life was getting more lonelier. No one ever told me I should learn tactile. They just didn’t know. I stopped getting invitations to parties and camping trips – and that broke my heart. “You can be a burden, we’d have to guide you and watch out for you” was their excuse. True that – I had no cane, no tactile skills or the ability to be independent. I understood the dangers of bringing someone blind to camp without these necessary skills – but it still hurt.
Now, I find it a blessing to be able to have conversations with more and more people through tactile. People who use ASL or international signs would be able to communicate with me. I can go to dark, dim-lit places and still be able to understand conversations 100%, although participating in group conversations can be a challenge when people keep grabbing for my hand out of turn!I’ve gone to several camping trips post-CHKC and it’s been fun! I’ve found savvy ways to be more independent around campgrounds (tying a rope from my tent to the bathroom, follow it in the dark), putting an ice cooler next to my seat 5 feet away from the fire, planting “landmarks” around the place so I know where I am. It’s become more pleasurable.
I often wonder if I knew how to tactile or participated in the DB community when I entered Gallaudet, that my social and educational life would have been easier? Of course it would have been – but at the same time, the struggles I went through the first few years of my Gallaudet years were the years I learned more about myself and how people can view you so differently as a Deaf sighted/Deaf Blind person.I also often wonder if I knew how to tactile before I met Alex or other guys – would it have turned romantic? Or lasted longer because of equal ability to communicate? I’ll never know… but it’s best that way because right now, I’m content that I discovered tactile, the DB community and most importantly, my DB identity at 24 instead of too late.
But at the same time… I yearn to see more DB leaders being role models to many teenagers who have Usher Syndrome or some kind of blindness – because guidance is what they really need instead of feeling lonely, hopeless and angry. I thank God every day I have had the support from several friends, from the time I had no tactile skills to today.To these friends: Thank you for being there for me.
Alex, thank you for the push, even if it was unintentional nor obvious. After not seeing him for five years after my last visit in Boston in 2003, it was a great thing to be able to talk to Alex again – through tactile – and for maybe the first time in our 7 year friendship – I was able to understand him 100%. And that felt damn good.
For those 9-0 (Usher’s) out there… it may be hard for you to give up visualizing ASL, but when it gets to the point where you realize you cannot understand more than 40% of the conversation, you should learn how to tactile. It’ll make your social life easier… I promise you that.
Buenos dias and tactile love,Coco