Ushers in Denial, Transcribing and Fake Tanning Lotions
Hi. I'm Coco. I'm changing roles. I'm not the sweet, nice girl like always. Nope. Today, I feel like a "bitch." I'm going to put my feelings out there in a big way! All the stuff that's been piling up inside -- I'm going to let it out!
I have a few pet peeves to share with you!
My first pet peeve:
If I express my stories about my experiences with Usher's Syndrome, like, for example, my recent vlog, where I talked about how much I will miss, or what I would miss seeing, when I become blind, you know...(If you have not yet seen it, check it out.)
That vlog got several e-mail comments, but a few of those I read, made me ticked off. Some of those who sent e-mail have Usher's Syndrome themselves, though not many.
Some said, "Coco, I'm shocked that you made that vlog! What's up? I though you accepted your Usher's Syndrome and you were progressing and moving on. You seem to be in denial."
Next, another comment said, "Why are you doing that volg? Do you expect other people to feel sorry for you?"
Excuse me! You are the ones in denial. Not me. No. I'm willing to open myself up, explore what I'm feeling and share those experiences with you so that both the sighted or blind can understand my perspective. Why should I hold everything, all my feelings inside? No. No.
You know that before I did that vlog many, many people commented that my vlog really impacted them. It gave them the chills and made them feel in awe. It inspired them, and they said, "I've learned from you in that vlog. Now, I will try my best to learn/do tactile signing and explain things more deeply for other deaf-blind individuals."
That's my point! So, you, out there, with Usher's Syndrome, who belive that holding your feelings inside and closing yourself off to the world and staying in your little holes is the best way to deal with you gradual loss of vision -- I feel sorry for you!
You know, when I finally accepted my own Usher's Syndrome a few years ago, when I opened up and let people know what I was going through, I informed people I was becoming deaf-blind and was now involved with the deaf-blind community, I let them know I was keeping a positive outlook, and I intended to keep on going in life just as before -- it felt like a mountain was lifted from my shoulders. The burden was off me and I felt light! I began to realize there were a few things I could do to change and accommodate my new life as a blind person.
For example, I learned to use a cane. It made me feel very safe. I can't imagine myself without it. Now I had to use tactile signs, but I discovered it was really nice! I wasn't able to understand communication fully before. I was only catching some of what was being said, but parts were still flying by me 50% of the time. But with tactile signs, I was catching 100% of communication! However, I do sometimes still depend on my eyes a little to follow communication, but I use both vision and tactile signs back and forth as needed. But because I understand tactile signs, my life is so much better now!
But all this denial, denial, denial, denial -- STOP! You know who you are!
My second pet peeve:
Every now and then I make some vlogs and I express myself. I have tried once in a while to make a transcript. This means I would have to watch my vlog over again and translate my ASL signs into a written transcript text. Why do this? Because there are hearing people who watch videos, study the signs and think they're cool. They want to know what I'm saying. This way, they can read.
Or, deaf-blind who can't see the vlog (video clip) might still be able to read the transcript. My problem, though, is that after I sign and post my vlog, I have to look at it all over again to get the words, but it's incredibly hard on my eyes. The viewing and the writing over and over tires my eyes very quickly. On the average, I have to stop every minute and write, then go back, and write again, over and over. Whew!
So, a few times I did to ask people out there on DeafRead.com or other websites out there, and even e-mailed some people and asked, "Would you mind writing my transcript for me? Any of you mind? But NO ONE volunteered. So I tried asking again, and again, over and over.
I do remember a while ago, I did ask if anyone would transcribe my vlog, and many of the DeafRead readers responded very optimistically, saying, "Yes. Transcribing your vlog is a good idea.. Yes, yes, we must include deaf-blind." They all seemed to agree and support the idea, but now, it seems like that idea disappeared! Now, we're seeing more and more subtitling and captions. But how are deaf-blind people able to read those subtitles? How? That's what I'm talking about.
You know, I did ask Ben Vess, (Der Sankt) a few months ago. He had announced that he had a transcript service. Everyone seemed enthusiastic about this and began sending in their vlogs to him, including myself. I sent him a few as well. But I never heard from you! You're all talk! What's up with that? I guess your 15 minutes of fame are over! If you didn't take it seriously, then you shouldn't have talked about that in the first place!
If anyone out there is willing to volunteer and write up a transcript for me, PLEASE e-mail me. I would be sooo thankful!
(Big sigh.) Ok. That aside.... I think that's probably all for now.... No.... I'm thinking of something else is bothering me.... (looking at fingers) Oh! Right.
My third pet peeve: (Grrrr...)
I occasionally use that fake tanning lotion on my skin. Recently it's been raining a lot outside. So I decided to put some of that fake tan lotion on my face and arms, etc. But accidentally, last night, before I went to bed, I forgot to wash the tanning lotion off of my hands and fingers. They looked fine to me at first. I didn't notice anything unusual. All seemed well. Then I got into bed and went to sleep. But when I woke up I hollered, "Ahhhh!" (Showing orange fingers to the camera) Do you see the orange color in between my fingers and on the front and back of my hands?! Blah! I didn't think about washing it off! Sicko me! That's what happens when you're deaf-blind. You overlook those kinds of things because you can't see them. Now, I can really see the orange. Gee!
I'll be embarrassed when I go into work tomorrow and people notice the orange color on my fingers and hands when I sign. Gulp! (shaking head -- sigh...)
Ok. I think that's all for now. I feel a bit better now that I got that all off my chest. I'm done. Vlogging is a nice way to express you feelings. Yes. And I hope to do more -- ONLY IF someone could volunteer to do my transcripts and be serious about doing it!
Ok. Thank you and good night -- wherever you are in the world. ILY