Wednesday, December 09, 2009

Dealing with staring and noisy people.

For me, living with cerebral palsy has its challenges and difficulties. I have physical limitations that make it difficult for me to do certain things like feed or dress myself. Even with the limitations of my disability, I live a really full and interactive life. I think of my life as being normal and mostly uneventful. I am really just a regular dude actually.
That is why sometimes I don't understand why random people come up to me and ask a whole bunch of questions about my life and how I go through my day. I called it the adult version of when a child openly stares at you like you are the bogeyman incarnate. But with the kid you can use the excuse that he or she does not know any better. With adults this attitude that people are freakish comes out in a few amusing ways.
Some people react by ignoring me, like when I go to talk to people and they walk away. I mean PEOPLE?!!... I know I was talking to you and you know I was talking to you. The least you can do to show you have sense is to address me with acknowledgment. Especially if you are in the service industry and it is your JOB to address my needs. It is not a good look to just talk to my attendant. It is not like it is a joy to talk to you neither.
Other people have the bright idea of treating me like a child or buffoon. This reaction is also hilarious for me and yes I am actually laughing at you. I should wear a shirt that says "Yes I understand everything you say and no you don't have to use a loud voice or talk slowly when speaking to me" and on the back I would have the word "IDIOT!" in bold letters. Few people will see the back of the shirt since most of the time I am in my wheelchair but, I like the concept anyway. I mean come on PEOPLE! I went to college and graduate school and can get what you are saying. I will now give you free license to talk to me normally. Especially the TSA and flight attendants, just saying though.
My favorite adult reaction has to be the over interested bystander. I mean come on y'all my life cannot be that foreign and exotic. I grew up in Lafayette in the heart of California suburbia. I went to school, got a job, and have a social life. Yes interested bystander I have a social life. One woman asked who I called on and I said my mom and she dropped the subject believing I didn't know what I was talking about. Yes, I did know exactly what she was talking about, but the other people I call on my phone is really none of her business. I like the random women that are that interested in me to be physically attractive and be willing to give me their number to arrange a future date. It is a double standard but it is what it is.

This blog was originally posted at the Dynavox Mayer-Johnson Blog (

A chapter of my novel

Here is a chapter of my novel for you enjoy. If it is a horrid piece of literature please e-mail me and tell me about it:

Chapter 6

It was a rainy day for Jamil’s first day at kindergarten, but he was a ray of sunshine. He was very excited to be finally be going to regular school. Before this he went to a preschool for disabled children, but he really didn’t like it. He felt that his teacher Mrs. Gargimesh treated him as if he was stupid and she disciplined him far to often when he was in her class. She would lock him in the class room closet every time he drooled too much and made his shirt wet, had an accident and urinated on himself, had too much extraneous movement caused by his CP, or when he babbled too loudly when the class was singing songs to Mrs. Gargimesh’s out of tune piano. It was an understatement to say Jamil didn’t like her. He finally conveyed to his mother that Mrs. Gargimesh was no good by pointed to the words “bad” and “teacher” on his communication board.
Pamela was shocked to find out that her son harbored so much bad feelings toward his teacher. She quickly went into action and contacted the school district about mainstreaming her son. The school district planned to put Jamil in another special day class when he entered elementary school, however his mother was not having it and planned to sue if they barred her son from a regular class. Finally the school relented and said Jamil could be mainstreamed if he could pass a skills test that quiz him on his knowledge of shapes, colors, the alphabet, and counting numbers. Since Pamela had been reviewing all that stuff with him since he was two, he easily passed with flying colors.
Jamil being allowed to attend kindergarten coincided with Pamela getting accepted to nursing school at Laney College. She was ecstatic that she got into the program and even more excited that she could fit her class schedule around her work as a janitor for Kaiser. She usually worked in the mornings and took classes in the evenings so that she would be home when her son came home in the afternoon. Pamela had a good feeling that since both she and her son were in school that both of their futures would be bright and full of possibilities.
Now both Pamela and Jamil were waiting for the school bus to arrive to take Jamil to his new school. Jamil was stretching his neck as far as he could to see if he could see the bus coming down the road. Pamela was also looking for her watch and nervously tapping her toes, not wanting to be late for class. Finally they could see the bus coming around the bend. Jamil’s sight of the bus made him ecstatic and he wiggled around frantically around in his wheelchair. Pamela was pleased her son was so excited about going to school because she had worked extra hard to get him that opportunity.
When the bus finally pulled up to the curb next to their apartment complex Jamil was so excited that Pamela had to whack his wrist a few times to get him to behave. When the bus driver, Sam, finally popped out of the bus to Jamil on board he found him starting to cry.
“What’s wrong with him?” Sam inquired. He looked liked a black Santa Clus in a track suit to Jamil. Sam still rocked the short jerry curl like Michael Jackson in the “Billie Jean” video with horn-rimmed glasses and a thick croft mustached. Pamela thought he would be handsome if he weren’t so much overweight. “Does he usually cry like this.”
“No of course not” Pamela remarked while quickly drying Jamil’s tears. “You know how boys get when they get mischievous.” She turned to Jamil, “Shhhh, you want to scare off your new bus driver before he is able to take you to school for the first time. Shape up boy.” Jamil nodded in compliance and tried to stop crying, but started whimpering instead.
Ignoring Jamil Sam introduced himself to Pamela, “Hi I am Sam and I will be Jamil’s bus driver for the school year.”
“Please to meet you. Jamil is really excited for you to take him to school.”
“Yeah I bet.” Sam brought down the wheelchair lift that will lift him with Jamil and his wheelchair to the back entrance of the bus. When it was lowered to the ground, Sam directed Jamil’s wheelchair on to the lift as Pamela kissed Jamil good-bye.
“Bye sweetheart, see you this evening. Margaret will be here this afternoon to look after you while Mommy is at work.” Jamil nodded in reply. “Say something on your talker before you go.
Jamil quickly typed in his Touch Talker one his preprogrammed phrases, “I love you Mom,” which resulted in his mother giving him a great big hug.
Asd Sam pulled the bus away from Jamil’s apartment, Jamil waved bye to his mother. He wondered what his life at school would bring him. He heard only good things about school from his mother, pastor, and Margaret and was excited to experience it himself. The bus couldn’t go fast enough for his liking.

Jamil looked around the room at his new kindergarten class with a lot of nervousness and apprehension, especially since his new teacher had him in front of the class to introduce him to everyone. His new teacher, Mrs. Rhineheart, kept saying his name wrong, but he thought it was funny rather than being annoying. She kept elongating the last syllable of his name so it came out “Jamile” producing giggles from Jamil. “Class Jamile will be with us in our class this year with his aide Ingrid. As you can see he uses a mini computer to talk and he is in this snazzy wheelchair. You each can take turns pushing him around and talking to him during recess. Jamile has prepared a little speech that will introduce himself. Go ahead Jamile.”
Jamile took a huge swallow then push the buttons in his Touch Talker to speak his speech. The machine blurted it out in a mechanical voice. “My name is Jamil. I am five years old. My favorite TV show is Sesame Street. My favorite Sesame Street character is Snuffaluffagus. I like to be friends with all of you.” Jamil gave a gigantic smile after his speech had ended. He just new he was going to have a lot of new friends when recess came.
“Very good Jamile. You did a splendid job introducing yourself.” Mrs. Rhineheart commended him as Ingrid rolled him back to his desk. “Class do you have any questions for me or Jamile?”
A girl with two fat black pink tales with pink bubble hair ties and in pink oshbigosh overalls quickly raised her hand. “Mrs. Rhinehart, is Ingrid another teacher like you?”
“No Latoya, Ingrid is mostly going to be helping out Jamile, but maybe she can help out in class if we ask nicely.” Mrs. Rhinehart said with a quick knowing nod to Ingrid.
“Hi kids, Jamil and I are very much excited to spend this school year with you all.” Ingrid stood up briefly and waved her hand to the class.
Anymore questions?”
A puggy kid with slick back hair shot up his hand. “Mrs. Rhinehart, why does that kid uses that machine to talk. Is it because he’s too stupid to talk normally.”
“Ernesto that is not a nice thing to say to Jamile. Apologize to him this instant!”
“I am sorry Jamil.” Ernesto said with his head down in shame.”
“That is totally on called for. Today you will be on time out from now until the end of lunch.”
“But Mrs. Rhinehart…”
“But nothing. Be quiet before I make your time out longer.”
Ernesto sat back in his chair sulking on the verge of tears. He gave a menacing look at Jamil before he took his chair to the corner of the room where he was to spend his time out.
“Now class it is about ready for recess. Now as I said before, you can all take turns pushing Jamil on the blacktop, but don’t push him too fast and make sure Ingrid is with you.”
“Ok Mrs. Rhinehart, we will” the class said in unison. All at once Mrs. Rhinehart’s class ran out to the blacktop with Ingrid pushing Jamil to go with the kids. Ingrid pushed Jamil’s chair to one side of the playground where he could see all kids, swinging on the monkey bars, playing four square, knocking on the thither ball, playing hop scotch and jump rope, and he got excited and wanted to join them. He quickly typed in his talker “Can anyone play with me?” and kept on repeating it in hopes that some of his classmates would hear him and come over to play some games and push him around in his chair. Unfortunately now one came. Jamil began to wonder if all the five-year olds in his class were partially deaf. Eventually Ingrid, who was reading a cheesy romance novel with a picture of Fabio on the front on the bench next to Jamil, got truly annoyed with hearing his talker repeat the same thing over and over again exclaimed, “Kid if you make that thing repeat that one more time I will tell your teacher to put you on time out. Do you hear me?”
Jamil turned off his talker and began to pout. He didn’t want to get in trouble he just wanted to play with the other kids. He wanted to experience all the fun things he heard school was and make life long friends like his mother said he would. However, now he found himself getting in trouble for just trying to engage with his classmates. Tears started to come out his eyes and he began to whimper.
“If you start to cry I will bring you right to Mrs. Rhinehart she can put you on time out. Do you want that? I don’t have time or patience for this.” That made Jamil start bawling, which made the kids on the playground stop what they were doing and come over and find out what was the matter with him. Ingrid having enough of the growing spectacle on the playground quickly took off the brakes on Jamil’s wheelchair and pushed him back to Mrs. Rhinehart’s classroom and parked him in the corner of the room. When Mrs. Rhinehart came back in the classroom Ingrid told her all that had happened.
“Sallly, this boy is full of trouble. Just because he cannot play with the other kids he is starting up such a ruckus. You need to talk to him and calm him down.”
“Ok Ingrid, I will handle it.” Turning to Jamil she gave a stern look and said, “Listen young man, I don’t tolerate students crying in my class so you better ship up or else I will kick you out of this class.
When he heard this Jamil attempted to stop crying, but he had a hard time completely stop his whimpering. He was convinced that Mrs. Rhinehart with her blanched white hair, wrinkle leather skin, frumpy clothes, and her spectacles with the attached around her neck Jamil convinced himself she was a real life witch. Jamil finally calmed down and Mrs. Rhinehart went back to teaching the class. When he went home he told his mother all that had happened.
“Don’t worry hun, you will make friends soon and you will only have this mean old Mrs. Rhinehart as a teacher for this school year. Next year you will have an entirely new teacher for the first grade. Don’t worry my son, before you know it you will have so much fun at school you won’t want to come home” Pamela exclaimed throwing her arms around him.
Unfortunately Jamil didn’t think it will be that easy for him at school at all.

Wednesday, December 02, 2009

Introduction to SF AIDS Walk

Snipet of AIDS Walk

Here is a snippet of my AIDS Walk Video: