Thursday, November 20, 2008

ALDA Highlights - Karaoke Party

Time is just seeping into unknown crevices and leaving me with little or no time to do much of anything. Priorities are rearranged and some of them are put on the back burner like this blog. It has been a month to the day that marked the end of the ALDA Convention and I wanted to share some highlights that everyone wants to know about - the Karaoke Party.

But first, a little history on the Karaoke Party. Since most of us are deaf, we can't really follow along with the words of the music nor can we keep a tune. What they do is they put the words to the song on a big screen so everyone can read them and they pass out balloons to feel the music. The balloons are far more sensitive to vibrations and far more reliable then using a table or our feet to feel the beats. How did this traditional use of balloons start? It started when a member went over to the next banquet room where they were having a wedding and he kind of, sort of - borrowed some balloons. The bride even joined them when she saw how much fun they were having. That was a start of a great tradition. I strongly suggest that you check out LaRonda Zupp's vlog that gives you a better idea of how the whole balloon things works. Click here to watch it :) It has yours truly featured.

But let me give you a little background information. Since the Karaoke Party is supposed to be the main event that everyone looks forward to and the date just so happen to fall the day after Halloween. Some of us decided to dress up. Jennifer and I brainstormed for days, we even got her kids involved. One of her offspring thought it was be a rocking good idea if we were a giraffe - Jen would be front since and I would be the back end of the giraffe. It was a novel idea and I applaud them for their creative endeavors BUT I don't want to be the back end of anything. :) We nixed that idea. I came up with this idea to be Abby on NCIS. I was really stepping outside of my comfort zone because Abby is gothic with chains, black lipstick and the ultimate combat boots and this Abbie that is typing out this blog is all about classic ivory lace dressed in chiffon and strands of pearls but as you can see, I managed to pull it off.

Jennifer decided to be her natural peace loving self as everyone's favorite hippie complete with shoes that brought her to a final height of six foot, five inches. I had a crick in my neck by the end of the night. :) She is hunched over in this picture. You will see the full heightage further down.

We were not the only ones dressed up! From left to right - LaRonda Zupp from Ear of My Heart as the cutest little fairy, Ken Arcia brought Elvis back from the dead, Abbie as Abby and Jennifer as the tallest flower child in the history of mankind.

Surprisingly enough, I thought it would have taken me a couple of drinks to get me up on stage to sing but with a little coercing, I got up there completely sober. I was doing my best Milli Vanilli impression. I look rather convincing don't I?

This is my favorite picture. This is Thing 1 otherwise known as Maddy, the daughter to one of my very good friends, Tina Childress. I wanted to take this little girl home with me. I was just so impressed with her intelligence and her signing capability - far better mine. Plus, I was having a political discussion with the little McCain supporter as we were walking down a busy highway made it all the more fun.

This is Mr. Dave Litman and I spreading the good word of peace, love and rock and roll. :)

Tina Childress as the Dragon and her adorable munchkins, Maddy as Thing 1 and Mia as Thing 2, Jennifer the flower child and yours truly signing off.

This is the founder of ALDA, Bill Graham with the very lovely and lively Elvis. :)

It was good times, good times indeed. You can go here to check out more pictures from the ALDAcon and if you are interested you can join ALDA on Facebook. :)

Friday, November 07, 2008

Cogan's Syndrome

There are many reasons a person can lose their hearing. Some people lose it gradually and some loss is sudden. My inbox is littered with people that go from one extreme to the other - perfect hearing to sudden deafness. Many personal tales have words like Autoimmune Inner Ear Disease, Meniere's disease and Meningitis are duplicated several times over.

I've seen the symptoms sprinkled across my screen so much that they almost seem to run together.


Well, I learned about a new one at ALDA. I was reading the CART screen captioning the voice of a woman that identified herself as a Coganite.

Coganite, Coganite, Coganite

What the hell is a Coganite? A Coganite is a person that has suffered from Cogan's Syndrome. It is a rare, extremely rare autoimmune disorder can cause deafness and blindness. I believe I overheard the woman say that there has only been about 150 cases in the United States. So yeah, I would say that rare alright.

The symptoms of Cogan's Syndrome are:

  • Rapid onset of hearing loss in one or both ears
  • Vertigo
  • Nausea
  • No balance or severe gait
  • Tinnitus
  • Nonsyphilitic Interstitial Keratitis (inflammation of the eye),
  • Sensitivity to light
  • Vasculitis (inflammation of the blood vessels)
  • Arteritis (inflammation of the walls of arteries)

It seems to occur in young people from the age 22-29 years old. It has been known to occur in some older people but it is more common with the younger crowd. No one knows what causes Cogan's Syndrome. The good news is that there is a treatment for Cogan's which is cortisone type medications such as everyone favorite mood changing steroid -- Prednisone. The bad news, if it is not diagnosed quickly, a person usually suffers from a complete hearing loss and partial vision loss.

The good news is that no one has to deal with this alone. You can contact the Cogan's Contact Network if you or a family member has been recently diagnosed and you want to connect with others that have been down this road.

For the rest of us, we can inform our doctors of this extremely rare condition to raise awareness because an affected person hearing and sight can be saved and it is only a matter of time that it can.

Tuesday, November 04, 2008

I. King Jordan at ALDA

Glancing through the ALDA program book, I came across a familiar name that was going to be giving a speech at a luncheon. I found myself wondering, "Who is I. King Jordan?" because I hadn't the faintest idea of what he has accomplished. With a little Googling here and there and chit chatting amongst others, I found out that he became the first deaf president of Gallaudeut University after a week long protest in 1988. I didn't know too much about him because I was only eight years old. I was more into running over my cabbage patch dolls and beating the old commodore 64's up. Plus, I wasn't into watching my non-captioned television.

Back in 1988, Gallaudet Board of Trustees Board of Trustees had three finalist for presidency position, two of them being deaf and I. King Jordan being one of the two. The Board of Trustees Board of Trustees announced that they picked a hearing person for presidency, a woman named Elisabeth Zinser. There was a member of the Board of Trustees name Jane Spilman that said something to the effect that, "Deaf people are unable to function in a hearing world." After years of oppression, the students, staff, alumni and faculty felt it was time for a deaf president. This started a week long protest called "Deaf President Now."

The first day, the campus marched from the University to the hotel where the Board of Trustees were holding they're meeting and demanded an explanation. This march continued to the White House then to Capital Hill and back to campus.

The second day, the protesters took steps to block access to the campus and the board members were presented with four demands that were promptly dismissed.

  1. Zinser must resign and a deaf president selected.
  2. Spilman must resign from the Board.
  3. The percentage of deaf members on the Board of Trustees must be increased to at least 51%.
  4. There must be no reprisals against any of the protesters.

The protesters marched back up to Capitol Hill and started to attract media attention.

The third day, campus was reopened but students boycotted classes. There was four members of the student body emerged as leaders of the protest. By now, the DPN Revolution was on every news channel and newspaper across the country.

The fourth day, Jordan, the four student leaders and Elizabeth Zinser had a meeting. The students encouraged Zinser to resign but she did not want to comply. There was a press conference held that day where I. King Jordan announced that he supported the Board of Trustees decision to pick Zinser as president.

The fifth day, Jordan retracted his support and Zinser resigned. The students protests and rallies intensified because only a half of one of the demands have been met.

The sixth day, nothing much happened apparently.

The seventh day all of their protesters demands were met.

  • I. King Jordan was named the first deaf president of Gallaudet University.
  • Spilman resigned from the board of trustees.
  • Phil Bravin, the only deaf member on the Board of Trustees was appointed Chair.
  • No reprisals to the students.
  • A task force was going to be created to ensure that there will be a 51% of the Board of Trustees will be deaf members.
Therefore, history was made. The students accomplished so much in so little time. It was time that someone that was one of them took over. Once I learned the history, I was really excited to listen to I. King Jordan give a speech while I was at the ALDA convention. He is late-deafened. He lost his hearing at 21 years old in a motorcycle accident. He talked about how technology has changed over the past twenty years. Back then, there was no closed captioning or no professional interpreter services. All we had available was basic email, pagers and TTY. Now we have options like interpreting, closed captioning, CART, PDA's and Blackberries, email attachment and text messaging, Captel, VRS (Video Relay Service) and VCO (Voice Carry Over). Times have truly changed.

He started talking about advocacy work since he is a full time advocate for the deaf and disabled. He left quite the lasting impression on me when he said that if you could reach to one person, help that person become a strong deaf individual. Being deaf can take a toll on a person especially when they have had perfect hearing at one point in their life. There is no reason why they have to face this alone.

He brought up the fact how cochlear implants are subject of sensitivity with the Deaf Culture. I know this first hand because a majority of the hateful discrimination that I get is from culturally Deaf people that feel that there is nothing wrong with them. I find nothing wrong with them either but they find an awful lot wrong with me because I chose to hear with a cochlear implant. He talked about how cochlear implants change the way communication happens because those of us with a cochlear implant listen and talk more then sign. He expressed that there should be a way to reconcile the different communication methods. This brings me to a profound quote that Jordan used to close his speech.

"Don't ever forget that a deaf person with an implant is a deaf person with an implant. You stay a deaf person but the technology helps you with your communication."

Jennifer, I. King Jordan and Myself.