Deaf Blind Retreat (Orlando)
You know, ever since around the time I got this blog and reading DeafRead and generally being an actual self-advocate recently, my life has changed. But over this past weekend of Martin Luther King, I learned many more things, and further changed my life. I cannot say enough of how happy I am to make connections, to understand more about different ways of going about my daily life.
I only learned about the retreat on Janurary 8th, and the deadline was Jan. 10th. I thought I wouldn’t go because I had no transportation and mom had to work. I didn’t have high hopes of going. Then during dinner at Applebee’s, mom got a phone call, and talked about the retreat. Then I realized that I would be able to go.
Then I became excited, but nervous, since I had no idea what to expect. Then Friday came as I came home from school, my mom and I left for Tampa as my car pool would be picking me up from there and on to Orlando. Then we met up at a gas station and I met some of the people there. I met Jack there, who was the speaker for the retreat, and he has Ushers, and has a small Hearing dog, and he’s such a cu~ute li’l thing. I met other people there as well, all of whom I got pretty close to for a weekend’s worth.
There were 3 Interpreters, Jack and a student car pooling. The student’s name was Wideline. Wideline and I chatted, then there was a communication break down and so, a girl name Marci, became our interperter and we had a lot of fun communicating as her speech wasn’t very good and relies on ASL. I learned some signs along the way. So that was great.
Once we got to Orlando, I met my roommate at the hotel and, to my surprise, she had Ushers.
Now, before I continue on, I never met anyone my age with Ushers. I thought I was rare for my age, because I never met anyone even remotely close to my age. I really thought I was alone. Until the retreat that is.
To my further surprise, there were many more people with Ushers, more than I thought was possible in one location. There were only about twenty students there, and I believe there were three other students with ushers. Given how I was told that Ushers is really rare, to find 5 people (the other two as speakers) in one location really was a surprise.
Anyway, at the hotel, I went down to the conference room where all the action would be at. We were given the choice to decorate sandals, and I brought my acrylic paints with me to do that. Sometime during that, there was a girl sitting on the left next to me, and apparently, there was a miscommunication as I was just now told during an IM conversation with a guy who sat across from me to the left. She must’ve asked/said something to me and to her, I made an ‘angry face,’ which is my ‘concentrating face’ and she called me a bitch in ASL, of which I don’t know the sign for, still don’t know it. The guy was like ‘Whooaaa’ as he quoted himself. I don’t even remember the commotion and I thought everything was fine and dandy.
-sighs- I need to modify my face expression for concentrating, because I do look pissed when I concentrate. It’s really not fair. :\ I think ignorance really is a bliss, and wished I never found about that, but now that I do… I do wonder if that’s really the reason why people avoid me at school. Miscommunication galore. And it makes me depressed thinking about it.
And really, besides the totally blind boys, I was the only one there who didn’t know ASL very well to communicate fluently, and I really felt left out even though there were interpreters available on hand. Since I am new to all of this, I didn’t know how to handle interpreters or the etiquette, or any of that stuff. Somehow, I thought I shouldn’t be using interpreters or relying too much on them, even though they’re being paid for doing the job. Don’t even ask me how I got the mindset because I’m not sure myself. I guess it’s because I am new to being able to talk to another person of another language and I never had the experience until now–and attempting to learn the language.
So anyway, once the introductions started, as I practiced my self-advocacy, I spoke up, saying that I have an FM system that plugs directly into my cochlear implant and had everyone who can speak or interpreting hold the microphone and amazingly, I could hear every word people said, even if they were across the room or next to me. A rarity in such a situation like introductions in classroom and what not. I was happy that I could follow what they said about themselves and as a consequence, able to know everyone’s names. Well, as much as I could possibly remember. Which is more than what I could even hope to get out of a classroom without FM or CART, I’d be lucky to know two names of students.
Moving on, it was a good start of the retreat, I was not being a recluse and even lost track of time as our curfew was 11, and it was 11:15 then. I really loved the people there.
Saturday, Eva, my roommate, woke me up and I realized that my hotel alarm clock never went off, and so I was grateful to her. And thus, my trust in hotel alarm clocks will never be restored again. Then we all went to the Lighthouse after breakfast. Lighthouse, as it turned out, really wasn’t a Lighthouse, but rather, a place for the blind people for rehabilitation. We’ve listened to speakers and did some activities. Then the FM system was being screwy, as if you hold it in a bad way, it flips out. And then I got tired of using FM system, and I only got it the previous day (Friday) from school (instead of CART, more on that later in a different entry). I then relied on lipreading and trying to read some of the signs as well as the interpreter voicing. I didn’t get all of the information, sadly. And that made me upset and fled to the bathroom. =\ I never told that to anyone because, really, they were doing everything they can to prevent any communication breakdown and I thank them for that–they did try everything imaginable to resolve the issue. But that’s not to say that I didn’t get anything of what the speakers said, I got maybe 70% of what they said, so it’s pretty good, compared to my Art History class where I only heard at most, 40%, not including student discussion which is nil. As usual.
During Lunchtime, as it was after I was being upset in the bathroom, I lost the appetite and didn’t eat until it was over and ate half of a pizza slice. People did notice that I was upset but I lied, saying that I’m managing, well, I did, but I didn’t say outright that I really was upset, because I didn’t want to be fussed over. Marci was awesome though, she made me feel better after sensing that I was not doing very well with the communications. I also spoke to the person, Barbara, who works with Helen Keller National Center (HKNC), and we’ve e-mailed before, talking about the issues of CART. So, she and I talked about what’s going on, what I need from her (advocacy of sorts), my experience in the past, etc, etc. It was a good conversation.
Speakers continued and what not, and then it was time to get ready for the dance hosted by the Outreach Program (for the blind). I had good fun dancing as I love to dance. Though, there was this one guy that threw me off as I first entered the room and was introduced to a guy. After we were left alone, he asked if I was seeing anyone and I said no. Then he asked if I wanted to be his girlfriend. I thought he was asking if I have a girlfriend, suggesting that I was a les or bi. (I was wrong, it really was him asking me to be his girlfriend.) -sweat- Right off the bat? Just because I’m wearing a really (hot as some people said at the dance) cute dress and generally being cute, doesn’t mean you can ask me out right away. D: Well, you can, but not with me. So I turned him down politely. I wasn’t interested in long-distance anyway as that really soured all of my relationships, which all had have been long-distance.
Anyway, after the dance, we were too tired and went to our rooms right away. I wanted to stay up and interact with other people, so i went to 7-11 to get some energy drinks. I shouldn’t have… As I was sent to my room at only 10:15. -sighs- I went to the elevator and Debbie, one of the helpers at the retreat and I talked about ASL and Cochlear and stuff in general about communicating. I can’t remember who it was that suggested the idea (me or her) to not wear the cochlear to Disney World–Magic Kingdom the next day. I gave that some serious thought.
I then went to my room and did some reading and then thinking hard and getting upset. My roommate came in and saw that I was in the furthest ‘room’ and not on my bed and came to ask if anything was wrong.
I took this time to rant about my lack of communicating with anyone, of which she understood and admitted that she was learning ASL herself, but she was better at it than I was and did use interpreters–as I didn’t see her using. That made me feel better.
It was also when I decided that I will not wear my cochlear to the Disney World. I did try to sign, but I keep reverting to speaking, and the other person would start speaking, and then it became an endless cycle. Without the cochlear, I would have to force myself and the other person to communicate with me via ASL and lipreading.
As it turned out, I did learn loads and had the weird experience of tactile signing when I was at the haunted house ride and couldn’t see a thing due to my vision. I had the most fun at the park with not hearing a sound, I felt at peace, even if I couldn’t hear some of the songs that Disney is famous for. I also relied heavily on SSPs, people who act as a guide for the blind, so I wouldn’t walk into people. And I never ran into anyone, it was amazing. It was nice not to walk into people anymore.
Another thing, I understand that because of my voluntary removal of my cochlear for the Disney might have frustrated me and others, I still had lot of fun. It’s odd, I should be feeling left out and what not and angry and regretting that I ever took my CI off. I never had any of those feelings. It was the happiest decision ever happened that I made for myself.
Also, I was talking to Emily, the coordinator of the retreat, about Helen Keller stuff, and who might be best to talk to and all kinds of information that I needed. It was then I decided that I might go there for few weeks.
It was frickin’ freezing there though, even though I was dressed really warmly.
And that brings me to today, Monday the Martin Luther King holiday and not much happened besides saying goodbyes and what not. I wore my cochlear today of course as I didn’t want to stretch my mind pass the breaking point. On the way back to Tampa, Wideline, Emily and I talked about various of experiences, such as Wideline’s roommates who are Deaf and couldn’t hear anything when there’s a knock. Wideline’s key didn’t work and so she was trying to get in and then got to the point of banging so loudly that three rooms opened up to ask what was wrong.
Emily ended up asking her to sleep in her room for the night. It was an amusing story to her roommates.
We also chatted about HKNC since Wideline went there for eight weeks. And the possibility of finding roommates from the retreat so I could learn ASL and go to a school that teaches it somewhere in Florida.
In the end, I also decided to start using my hands more often since it feels awkward for me to use my hands to converse so I will have to force myself to actually sign. I’ll even sign a bit with the people who don’t know sign, that they might be able to pick up some of it.
Overall, I had a wonderful, wonderful weekend. I more than I could possibly imagined. And I’m happy to make contacts with people who have similar experiences that I have. I couldn’t have felt more free. If it weren’t for my speaking up last month in December, none of this stuff would have happened and I would have continued my sad, lonely life.
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Hello friend :)
It feels SO good to see another Usher buddy opening up through blogs so that more people are aware about how we feel about the frustrations we go through as we become blind. I’m a full ASL user, so I cannot truly empathize with using CI but I understand the frustration of not being able to understand signs - I became upset every time I missed something and the others will say, “oh forget it”…. so I learned tactile at the Helen Keller Ctr in Toronto and it changed my life… look where I am today. It’s such a blessing to be able to sign and tactile, because when you sign and tactile, the number of people you’re able to talk to back/forth increases rapidly and in large numbers.
I hope you decide to learn more ASL from this experience. It would be so cool to tactile with you someday.
9-0 rocks. (check out http://www.youtube.com/tactiletheworld and click on the video for new sign for Usher syndrome)
hugs
coco
Comment by coco — January 21, 2008 @ 10:46 pm
I’m deeply touched with your experiences, thoughts, and feelings. Thanks for sharing. It’s worth to share.
Comment by deb ann — January 22, 2008 @ 6:18 am
Thank you very much for posting this message. It has caused me to think a great deal about serving Deaf/Blind people, and to realize that happiness is defined by the individual DB person, and not by ASL, not by cochlear implant, not by hearing aids, and certainly not by the “militant” ASL users who demand that ASL be used for everyone.
Your insights are very pointed and very accurate. Its going to affect my work on the state Task Force for Deaf/Blind people.
Comment by I_C_Voices — January 22, 2008 @ 8:55 am