Greetings folks!
I had contemplated doing a site like this, mainly to inform the public and my peers alike about the events, stories and important information about people who are Deaf and Blind and the people who are involved directly and indirectly with Deaf-Blind people. I am Deaf-Blind myself, having been diagnosed with Usher Syndrome Type I in my early childhood. Eventhough I can still see with a visual field of 5 degrees, I call myself Deaf-Blind because of the culture and community I immerse myself into.
From now on, I will be moderating two blogsites: my regular express-it-all blog at xanga and this site. I hope that by posting relevant information, people will become more educated about the world that I and many, many others, live in and more. Empowerment is my strongest suit, and I wish that you, the reader, would do some empowering yourself, too.
Any kind of information – medical, cultural, entertaining & fascinating – that has to do with Deaf-Blindness, please feel free to send me an email or post comments.
Look forward to this journey into the Deaf-Blind world.
Tactile love,
Christine a.k.a. Coco & Tactilejunkie
3 comments
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January 11, 2007 at 3:35 pm
Andrea
Congrats on your new blog!
I urge you to register your RSS feed at http://www.deafread.com so more people can find you more easily (I found you mostly by accident).
I’m going to link to your blog from mine.
Good luck!
January 11, 2007 at 5:29 pm
Dianrez
Hi, Coco,
I wonder about that 2% of Deaf people having Usher’s Syndrome, whether that includes subclinical Ushers as well. These are people who don’t know they have Usher’s and retain vision most of their lives. I have this. I found out during a routine eye examination at age 29…followup exams confirmed it, also that I would ‘probably retain central vision till late in life”. That seems to have been true, since it is now 30 years later and I still read, drive, navigate without difficulty at night, and only need to be careful about walking while talking to someone at my side. This puts wedges of missing sight straight ahead–I might walk into a tree and have nearly done so!
Important to consider: with the tendency to marry other Deaf, we need to think about passing it on to our children, possibly in a stronger form if two Ushers Deaf or carriers marry each other. Too many of us don’t know we have it.
January 11, 2007 at 8:20 pm
tactiletheworld
1) Deafread is giving me problems on the rss link. hopefully tayler will help solve the glitch.
2( interesting comment you made, dionrez. I will definitely make that a topic for one of my blogs in the near future. You’re not alone. There are many people with Usher’s that retain their vision for a long while until they are in their 60s, 80s, etc. I so happened to have the level of Usher I that progresses rapidly. It varies in every Usher’s. I’ve never heard a term such as subclinical Usher’s – Usher’s is Usher’s. There are a variety of levels and types, I shall post some research into that. Thanks.