Should You Be Honest to a Deaf-Blind Person?

Today during Interpersonal Communication class, we discussed different aspects of closure in relatiosnhips a) divorce, b) location and c) endearment (the dissolution and parting).I brought up my experiences as a DeafBlind person – experiencing so much dissolution of friendships and budding relationships in my lifetime largely because my vision started to fail me.I was diagnosed with Usher Syndrome in 1988 when I was eight years old, and throughout high school my vision didn’t even begin to reach the stage where I would start to think about preparing myself for the inevitable. I joined sports and had no problems communicating with my peers. I could see very well at night and even had the freedom to run through a graveyard in moonlight. Things drastically changed when I enrolled at Gallaudet and found myself becoming more clumsy and squinting to see objects long distance, reading became more difficult and conversations were completely misunderstood and missed. Three years after my enrollment to Gallaudet, I had reached a loss totalling 70 degrees (y’all without Ushers have 90 degrees angle vision each eye) during my eye examination in May of 2002. In October of 2002 I had discovered during a trip to the
Philippines, in three short months, I had lost 12 degrees MORE, bringing each loss to 8 degrees each. My life was thrown upside down – I could read regular size 12 font no more, it was all but impossible for me to understand or see someone in the dark even with moonlight, without a cane I tripped and fell down stairs and my friends started drifting away. I was not invited to camping trips anymore because they felt I would be a hazard and because I had not prepared myself to be a safe-conscious person, they felt I would be a burden. People did not want to talk to me during parties for the fact I would not understand the entirety of their conversation because I had no clue about Tactile or other methods to communicate. In all, I was mortified I was becoming blind and had always shunned the idea of learning how to adapt to life as a blind person for fears I would lose more friends. Irony is….. when I finally had the courage to learn Tactile and immerse myself with the Deafblind community beginning Spring 2003, I found myself to be a lot more content, smiling more often and my confidence boosted. People were shocked at first when I began using my cane during night time and even more so when I decided to bring along my black-red-white best friend, Miss Candy Cane, along for the ride each and every waking moment. Suddenly, respect came more often and I respected myself so much more. I go to bars with ease now, knowing what areas I would ask a friend to (assist, guide, interpret) for me, and what I can do on my own. I so LOVE to get ‘lost’ in a bar and see who I bump into… sometimes old, old friends and sometimes new faces that find it so damn fascinating to communicate with a deafblind chick.
Yet… I still sense friends and people are drifting themselves away from me, sometimes I suspect because of their frustrations from my not understanding their conversations fully, and feeling somehat like I’m a burden to them. I told the class of my suspicions of endearment by people who avoid me or cut conversations short to just a hello and bye because they just simply cannot handle my Usher’s. A guy, Matt, said he wanted to be blunt with me. Matt and I talked on occassion, he and I lived in the same dorm for two years. He is a funny and smart guy, but I find it a challenge to understand his signing, it gets fast and snippy sometimes… and as of late he almost never talks to me, he just grins at me and leaves without asking me how I am. He says it’s because he noticed that I really don’t understand his conversations and he gets tired of that, knowing that I am not as assertive as to tell him I don’t understand his signing nor put myself to tactile with him in broad daylight. I appreciated his honesry, and told him that I had just learned how to use Tactile as my secondary method of communication, while I still prefer to use visual ASL as my primary source of understanding conversations. It is and never will be easy for someone with Ushers to change ever so immediately to Tactile use for their every waking moment… I still linger to the remnants of my vision, savoring sign language through my eyes. I completely understand Deaf people’s frustrations when I miss a sentence or some important information, and I wish the progress of my adaptation could be faster so I could ensure that communication lines were more clearer and I would not give anyone any reason to be frustrated with me.While I appreciated Matt’s honesty, I did object to his timing of honesty, when I believe his part of communication could have helped me realize that there are some things that needed to be worked on. Be brutally honest, was my advice. I would not have learned Tactile if not for a good, honest friend who one night at a bar told me she was fed up of my constant assumptions of what she was saying and not understanding the whole topic. She, in a few words or less, told me to adapt or look for new friends who could bear with this shit. Damn. So many DeafBlind people out there lose friends and end relationships because they are afraid to adapt, for so many reasons…. number one reason is because if they accept themselves as DB, others will shun them and treat them as a minority. But in fact it’s really the other way around. Only if people were open and honest with me about their feelings and thoughts, I probably would have started Tactile 4-5 years ago and kept those by my side rather than seeing them drift away. I miss these people so, but at the same time, they knew I was going through something SO difficult and it would take time for me to adapt… I can’t become a perfectly adaptable DB person overnight. With support and love, I know my future is bright… For you out there who have friends or relative with Ushers… it will be a pain in the ass, or a painful process for the both of you, and ever SO frustrating, but it is even a more empty feeling in the world having to go through this experience alone.Hand in hand… guide, assist, interpret someone who is DB as long as you are open with your feelings and even if there is a moment you feel like he or she is a burden or a frustration…. communicate!!! Perhaps… SOME deafblind people will take it so personally and be defensive.. that is normal. Just bear with it and you know when the person reaches the end of their vision, they will already accept their blindness.. question is, will YOU still be there?love and honesty conquers all else.Christine, written March 2005 


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2 Responses to Should You Be Honest to a Deaf-Blind Person?

  1. Ben Vess says:

    Hey there. Read about you on another blog and wanted to come by and read what you’re saying…

    I like what you’re doing. Keep it up! mwahs

  2. Rox says:

    hey, I love reading your blog. I was born blind, and am losing my hearing rapidly due to meniere’s disease. I am profoundly deaf now, but can communicate using speech if I have my one hearing aid in. I don’t wear two because my other ear is completely shot. I am actually kind of having the reverse problem than you, in that I am learning tactile sign, but nobody else wants to seriously learn. They just seem to be happy shouting at me and expecting me to understand. It is very frustrating and I feel alone quite a bit. Congratulations on beginning to use your cane, and I am so glad you have friends who are willing to be helpful, and I am sorry that you’ve lost others. That is always so hard.

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