Friday, June 7, 2013

How Do You Communicate?

  • Trina Tbi Chambers-Bradlee But I don't really understand, are you communicating with me? You must be able to type, or dictate... I'm just trying to understand how your condition is so severe...

I have used this video before.

I have used it to demonstrate that communication is possible with the severely disabled. Watch the beginning and the end. He uses his head to type. It probably scrolls through letters and then he selects one with his head. He would have to do that with each letter and space. It would take hours to complete a sentence. Before I could move my arm, I was tried out on a computer with a head mouse. If I had to still use my head to type, you wouldn't see this. I wouldn't even attempt as this would take a very long time.                                    

I am  now able to move an arm, and therefor can use a regular keyboard. All letters are before me, making it faster and easier. Faster  can still  be a while, though. Recently I timed myself on giving a response. It was a little under 15 min. It was three sentences.

You will see I answer a lot with stories like these. I try to explain everything in a story. They are canned responses. It will take me a couple days to put one together. If I still used my head, it would probably be a couple months. That's crazy! I'm not that determined.

Before I could type on a computer, I worked spelling my name on a toy. I believe it was an apple of some sort. I'd call it the Happy Apple because it would play an annoyingly happy tune. I ended up practicing quite a bit with that toy turned off.

Once able to type my name on a toy, months later, I got a computer. My accident and stroke was in 2002, and I didn't get a computer until 2004 when I was in a nursing home. I didn't use a regular mouse. I did, though, use a trackball, which can be purchased like any mouse. I had difficulty hitting keys on the computer, but an occupational therapist set up the accessibility features I did not know were already on the computer. I didn't use a regular mouse for a few years. When I went back to the hospital, I used my Mother's laptop.

I used a laptop computer in the hospital.
It was in the hospital I sent my first e-mail. Before that, it was exploring, research, and games.

Now I'm on a regular keyboard and use a regular mouse. This makes replacing old, worn-out parts easier. I only use the Sticky Keys feature in Accessibility (Ease of Access on some) as I only use one hand and need to make capital letters. (If this is the only issue  you have, just hit the SHIFT  key 5 times and click on YES.) It has gotten easier to type on the computer, but it is VERY possible for a severely disabled person to do it.

Pretty much. I only use my pointer finger to type. Also, I'm not as fast.

"I'm just trying to understand how your condition is so severe..."

I'm not really anymore, but the definition of what was given to me says I will always be. It would seem logical to just change the definition. It also says this condition is "lacking consciousness" although the eyes are open. I am not unconscious! I think science wants to change me and the definition, but this is tied to politics.

It's looking like it will literally take an act of congress to change this.


  1. Thank you, Angela, for the video, and the explanation...In rereading my comment, I felt I had said it wrong...I wanted to understand how your condition affects you, because as I had previously understood PVS was that the person was unconscious, or in a comatose state...which you are clearly not comatose or unconscious.

    1. You worded it beautifully. I was able to give a thorough explanation. It's probably more information than u need, but this "canned statement" can last me a while, n can be used in various situations.

      As far as my condition, ppl have been guessing. Now that I can say, it's taking a lot for ppl to believe me. Very few do.

  2. If that is your diagnosis, it is...that's all there is to it...I just find you refreshing and inspiring!

    1. At Mental Health, I was the behavior therapist. The psychiatrist made diagnoses. I did the direct therapy, which meant going to the home n the classroom. I do make an argument for myself, n say I should be diagnosed w/ acquired savant syndrome. Savant syndrome becomes acquired from brain injury. It would explain my consciousness n vast knowledge.