Disabilities @ MindSay 
This is my 6th e-mail to Obama at change.gov about educational reforms needed in the US. Here is what I sent today.
November 24, 2008
Dear Mr. Obama:
I am a special educator in Oregon, and I have ideas and concerns about education in America. One of my ideas is that the “labels” for the categories of special education need to be examined since some of them are demoralizing and demeaning, like Emotional Disturbance. A better term might be Emotional Dysregulation.
In a perfect educational world—my “dream world”—every student would have an individual education plan. Not just students with “special needs” but all students including those who are advanced beyond their peers to those who assimilate information at a slower pace and those who are in the middle of the pack. This wouldn’t need to be a formal document with annual meetings and three-year evaluations, but something that is formulated with a student, parents and a teacher at a short conference at the beginning of the school year and reviewed one or twice during the school year.
Students with unique learning styles or special needs would continue to need a more formalized education plan with specially designed instruction, but they would not feel so excluded if all students had an education plan. At the least, the thirteen categories for eligibility into special education need to be re-examined and given more positive labels. (I don’t like any labeling of people, and yet, it seems inevitable, with our limited construct of language.)
Here are some suggestions:
Specific Learning Disability - change to Specific Learning Style
Visual Impaired - change to Visually Modified Learning
Hearing Impaired – change to Auditory Modified Learning
Emotional Disturbance – change to Emotional Dysregulation
This is my 6th e-mail to you about educational topics. I missed a few days last week because I was at a training conference. I know that the economy, the wars, and health care are big topics right now, but education is important, too, and I trust that you will work on educational reform as time permits.
Sincerely,
Bonnie Becraft, M.A.
Special Educator at Levi Anderson Learning Center
Northwest Regional ESD, Oregon
I dread going to my kids' school. And we have a meeting today concerning my daughter's IEP. They finally got her tested. We know she will be back in Speech Therapy for her speech impediment. Ppl barely hear it but it is there and it is part of the reason she is struggling at spelling and reading. We also find out if she has dyslexia or another language arts disability. It took me most of the school year fighting with the teacher to get her tested. DeLaney is a smart lil girl and the teacher there for the longest time said she is just being lazy and rushing through her work. Which is a typical 7-9 year old thing. But as her mommy, I knew better. She loves books and has her dad and I read to her constantly and she reads to herself constantly, but she kept getting frustrated because simple words give her hell. She knows a large variety of words and meanings but spelling she is not so hot over. I finally got the testing pushed and we go in today to find out exactly what is going on.
I dread goign to their school is cause unlike my hubby, I was a hell raiser in school. Don't get me wrong I got very good grades and graduated at the top of my class. But I knew that my grades were top marks, I was also starting varsity in sports, I was in Honor Society, the Letter Club, Bands, Choirs, Drama, Speech, and a few other activities. I wasn't as mouthy in school as I am now, but I was just as smart assed and I still owned up to everything I did. I could care a rats ass who knew what naughty thing I did. The only ones I had to worry about knowning my behavor was my parents. And unlike a lot of teenagers, I didn't try to hide it from them. I outright told them everything I did, where I was going, who I was with, and yay I did such and such. I am not sorry about it and I know you said I couldn't. But I did it and its done.
So in otherwords, I spent a LOT of time in the principales office in Junior High and High School. I was never outright suspended over anything because a lot of the shit I and a few of my friends pulled, couldn't be proved. And the few times they tried to sit me on the bench for basket ball, with my parent's going do what your going to do with her, the coaches and other parents would say NOOOOOOOO. So I always played ball or ran track and did speech and the such.
Now I dont' mind talking to the kids' principals and I don't mind going in when I have something to talk about but there is just something about sitting across a desk from a school principal and they called you in to have the talk. I felt the need to go plot with my hubby to get our stories straight! And I didn't do anything wrong!:D What makes this meeting all the more creepy crawly to me is that DeLaney's teacher will be there, her reading teacher will be there, the principal, the IEP teacher, and a counselor. As Randy pointed out one reason why I am probably dreading the IEP Meeting to find out what exactly is going on is that counselor. I know we didn't make the counselor to happy with some of our answers on the home questionner they sent home.
I outright told them it was none of their business how I punished or disicplined my daughter. Schools don't like that and counselors really hate that especially when most of them think they are smarter then most of the parents and teachers! I also refused to steriotype my daughter in other parts of the questionner and told them why. Which again they don't like that. When we were home for my Granny's funeral I had the change to talk to two princiaples and an IEP teacher............the other half of my mom's family if it isn't medical they are teachers:P Both my youngest uncle and one of my cousin's who are principals said to stick by my guns. That it is usually parents like Randy and I that are on top of what is going on with our kdis education and the principal most likely sees that and will back us up. Which we really like Mr. W he took the time to talk to us at enrollment about my religion and what I expected from the teachers and staff and he makes a point in greeting every kid and parent that comes through his school and KNOWs our names. Which is no small feet in a town with 4 elementry schools and Mr. W being principal in two of them! And my cousin's wife who is the IEP teacher said to speak up to the cousnelor and if they give you any grief just remind them of the parents rights concerning their child's IEP. And she would be more then happy to go over any of the recommendations with me over the phone. She agrees that DeLaney doesn't need every service they are going to offer and is more then happy to go over them and suggest which ones that DeLaney will need. It is very nice that she is doing this! I think it also helps that this is the cousin and wife that have twin daughters that are 3 months older or 3 months younger then DeLaney. And have a lot of the same learning problems. Which we have all been told it stems from being premature births. The girls are just fine mentally and physcially but up until the age of 9 they will have small learning problems since none of the girls had any phsycial or developmental delays from their births. And if you can get them caught and fixed early then they wont' need all this help when they get older and be labeled a statisitc.
Anyway we have a meeting at the school today. Oh joy, what rapture......make sure there is a soda and a cig waiting for me when we are done!
My mission is to educate others of issues relating to disabilities. Here is a piece I wrote sometime ago, my former boss suggested I post it anywhere I can:
Deafness is a complication of my primary physical disability, which is cerebral palsy, a birth defect. I have only within the past six years or so experienced great difficulty hearing, during this time I have been a witness to how the "out of the normal" frightens people. Can someone please tell me what is truly normal so that I can have a chance to understand it? "What is it like to be deaf?" People have asked me. Deaf...you see when you have lived with something for so long it becomes a part you. You begin to not even notice it, that's just who you are. How do you explain deafness?
Simply, I can not hear. No, to be honest it is much more than that. It is similar to a goldfish in a bowl. I am always observing things going on. People are talking all the time. It is like being a man on his own island...among foreigners. When you have a disability, whether you are born with it or it is because of some kind of an accident you become aware of the type of people that are truly out there. Having a disability is like having a sixth sense, the persons true character comes out all too quickly as soon as people come near you. Sometimes it angers me because I simply wish I did not have to learn how people are in such a harsh way. These people must think our disability is like the common cold, like you can catch it. In reality, you will not catch it; "Get over it!" I wish I could say that to some people, but I have to respect everyone no matter what; after all they are just uninformed.
Isolation is not a stranger to me. Isolation is all too common in the life of a disabled person. It isn't fair. When we go to a family reunion it is to see old family and catch up with them. How can I do that when the family, those that are not my parents, never acknowledges that I am really there? Relatives say "hi" and "bye." Sure they have said their hellos and goodbyes, but do they know what I have been doing since I last saw them? Did they know that I have worked in an early intervention program for individuals with autism? They would have learned so much! Probably not, sure I can go try and tell my family, but what good would it do. They never seem to care; after all in their mind I am not human. At least that is how they make me feel. A person should not feel obligated to make a person interested in your life. And it seems as though my family would rather me brag about my life, rather than show interest. If they truly care, they would come to you and ask out of the pure goodness of their heart. Have they noticed that I had been sitting there for hours among them? I guess not, and why is that? I always wonder. Do they not want to notice me because it would make them feel out of place to speak to me? I take great pleasure at amusing babies, reading, and helping out with food. Natural curiosity perks up upon seeing great laughter, crying, and people upset. Inquire only to be met with, Never mind, oh it is not important. Why am I always a victim of getting such a summarized statement of the whole story? After all I am part of the family, and I care about everyone just as much as the next person. I do not understand why the family must make it seem as if I should not know what is going on with my loved ones. Supposed to smile to show the happiness, little do they know how truly miserable I am. Miserable because this just is not my world, where should I be? I need to know. People are in control of language usage, I am lost and real uncomfortable. I think everyone would feel the same if they just took the time to relate to me.
Always feeling like an outsider among the hearing people; even if that was not their intention. I realize that people just do not understand, but why does it seem like they do not wish to learn. It has been said that the teacher is ready when the student is ready to learn. When will they be ready to learn? It is disappointing to me that the ones who say they care about me do not know who I am. These people only know who they have allowed themselves to know. That's not me. They always assume that I am a part of them, but am I really? Where does this human puzzle piece fit in the large puzzle? They assume that I am a part of them by pure physical presence, not understanding the importance of communication.
Once I was facing the choice of deaf camping weekend and the family reunion, which is a choice that is never ending. Facing the choice between the family commitment and deaf friends, I must make the choice constantly, and wonder why I choose deaf friends? I get such pleasure at deaf clubs, before I realize it the clock reads 2 am, whereas I look at the clock anxiously every few minutes at the family reunion. At the family reunion it is as if time is at a standstill. I just want to get away. With deaf people I am so normal; I fit "into the box" with them. Our communication flows back and forth, catching up on our daily lives. I love this part!
Zane has been my friend since preschool and even though his disability is no longer visible; there is an abundant amount of joy that we both receive when we reflect upon what we have been through. You can see the joy on our faces, and it is more than just a simple smile. It's a sparkle of joy in our eyes. It is hard to put to words, but Zane and I enjoy making fun of the stupidity that people show. We laugh about the many times that we have had people ask us the most ridiculous questions you could imagine. We wonder where do people come up with such things as, "Do you brush your teeth?" All Zane and I can say to that is...we have them don't we, so why wouldn't we brush them! It may sound strange, but we get just as much pleasure out of making fun of "normal people" as they appear to get out of making fun of us. Even thinking about it now makes us laugh.
Whether we communicate through American Sign Language, voice, or body language; we just get each other. Our frustration in the bigger world, is seeking the mutual understanding of others. No matter the disability we all face the same obstacles, but yet it always seems as if the "normal" choose not to acknowledge this fact. Contended smiles and laughing is something I look forward to, it is musical. Magical, I think. We are so attuned to each other's feelings, true happiness is so important.
When I am given the opportunity to go camping with my friends that I relate to, those who have any type of disability, it is the best party you can ever have! It's like having our own graduation party, but it is just more than once a year! If people would just take the time to get to know us they would see that we as a separate culture almost are very willing. Willing to let those of us who want to try new things they may have never tried before, such as wheelchair soccer! Most people would never guess that there is such a sport. When I really think about playing soccer, baseball, softball, basketball, or even dancing ballet is not about the actual activity. Many of us could careless how well we are able to do such an activity. All that is important to me is that I am able to have fun with my peers. There are very few places in this world where I can go and I will not be told that because of my disability I will not be able to do something. That is my main drive for participating in such activities. This is my world! I am overjoyed to be here!
So many times have I wanted an opportunity but couldn't have it because of my disability. One day in sixth grade, my class was outside for recess, and I was sitting on the ground looking through the rocks as I normally would. Collecting rocks was a childhood pastime for me. I collected rocks for most of my years in elementary school; some of these rocks I still have to this very day. All of a sudden I could see a girl swinging from the monkey bars, she was laughing and smiling.
"I should try that," I thought.
I asked my teacher, Miss Zimola, for help onto them, and she said very plainly, "No." Anger quickly built up inside me. There is no reason why I cannot have fun just as my other classmates did on a daily basis.
"Why not," I asked.
Her very lame reason was, "Well, I am sorry Melanie, but you were just not meant to climb on the monkey bars, besides you were having a lot of fun in the rocks over there." "No, I was not! That is why I asked to be put on the monkey bars, you idiot!" I thought. I more than anything wished I could have said that! Sometimes I think about going out and finding this teacher to tell her that even today! Now that I have grown up and had an opportunity to reflect on this incident I realize that my teacher may have felt that I didn't belong where the other children were simply because she may have had difficulty dealing with change. You see, I was the only student at the school with a visible disability. There is something about seeing an imperfection that all too often seems to make a persons heart stop. My teacher was a new, and I realize now that she could not help her reaction; it is just human nature.
The following week my physical therapist was coming to visit me; I was planning to ask him to take me out of my wheelchair and put me on those monkey bars. I was determined to prove my teacher wrong, no matter what it took! Even if I found out that I was unable to climb them it was worth it to me to know that I tried. For me I have to find out on my own what I am capable of.
"So is there something you would like to work on today Melanie?" He asked.
"Yes, I want to see if I can climb on the monkey bars." I replied.
"That is a very ambitious goal, but I am willing to help you give it a try." He said. So there I was hanging from the first bar, my arms were beginning to ache as I had limited strength but I couldn't stop now; I had worked too hard for this opportunity. I wanted to swing to the next so badly I felt the tears trying to come. I swallowed hard and pushed back my tears. I am strong, and I can do this I told myself. I slowly removed one hand to put on the next...I fell to the ground. Disappointment overwhelmed me at this very moment.
Was everyone right? I thought. Maybe I am just meant to sit and collect rocks, instead of trying new things. I wondered. What was making me start thinking like this? Maybe everyone knows that the more they tell me I can't do something the more I will try.
My physical therapist chooses that time to tell me, "I am starting to think that maybe your teacher is right." I am not sure what he meant by that, but I can only hope that he said that in order to motivate me more.
"What do you mean by that?" I asked. People have to just learn to let me try!
"Maybe you just have to accept that you will never be able to use the monkey bars." He replied.
How do they know that? I wondered. To this day I cannot just settle for no, I will try something until my heart gives up. I cannot just accept that I have a disability. I will not sit idle and watch the world pass me by; I have to do something with my life!
Within the next week I went back to those bars, only this time I brought some of my closest friends. Rachel, Brittney, and Ashley had spent the last two weeks watching me struggle with my goal of climbing the monkey bars. Rachel has always been the friend that would help me accomplish what I wanted, and it didn't matter how outrageous my goal my have seemed to her. She knew that once I had a goal set in my head it wouldn't go away until it was no longer an issue.
Ashley, Rachel's younger sister, was the one who always believed that I could do anything despite my obstacles; she has never understood why people treated me as anything but equal. If I needed help she would do anything even if that meant carrying me after taking a fall. In Ashley's view I was just as normal as you could get. She didn't treat me any differently than she would anyone else.
Brittney was the girl that no matter what she saw she had her own opinion on everything, and you couldn't change it. She just couldn't bring herself to see what I was capable of. To her I was different; I had no place on the playground equipment.
Many times if she saw me having fun with other kids she would come over and say, "You shouldn't play with her, she isn't like the rest of us." Over the years I tried to change her view of me. This particular day at the playground happened to be my last attempt, Brittney and I have not spoken to each other since then. I can only try so many times before I must realize that it isn't her time to see the light. I am in hopes that she will see it someday. By knowing Brittney it has given me an up-close and personal look at what I will encounter for the rest of my life. I thank her for this; it is because of her that I will not be bitter due to my early exposure to this type of narrow-mindedness.
Before I knew it I had made it to that second bar! It happened so quickly it is all a blur to me. Rachel was standing underneath me holding me to hopefully prevent a fall. I can remember hearing Ashley telling me that I should go for the third bar. I could hear her saying, "Don't chicken out now, you have my sister holding you just keep going!" Ashley was my own personal cheerleader, I love her for that! Brittney being who she was could not be seen, I assume she went home. Brittney had only come with because Rachel was there. I wanted so badly to go to the next bar, but physically my body was giving out. I wished I could fight this battle with mind over matter better. I could feel my legs being pulled by gravity, and my hands were holding the bar as tight as they could. I was angry at my body; I wanted to prove to myself that this was possible; why did I have to have such a weak body! Nothing was said but it was known I was done when I let out a sigh.
Rachel lifted me off and carried me to my chair with the help of her sister. That was so invigorating for me! I had accomplished my goal! I then went and found my teacher and told her... "I can do anything, just tell me no and you will see." Miss Zimola was speechless, and I loved that! I was laughing in my head, my teacher was wrong, this was almost better than using the monkey bars all together! Even though I have never been on any playground equipment since then, I am satisfied to know that I have given it a try.
In the deaf world or for me the world of having any disability it is all about just making it in society. So many people take so much for granted, whereas the disabled do not. Communication is so important. I was able to examine the lack of communication when my grandmother died about four years ago.
When people attend funerals they look towards the pastor for words of wisdom in their time of great need. The pastor came to the house to speak with many members of the family, in order to paint a well rounded picture of my grandmother at the funeral. This particular pastor had the opportunity to get to know our family very well, as my grandmother was the eighth death that year for my mom's family. We all had special memories of her that would be nice to share. I sat and listened to the many stories that people told of her.
My most precious memory of her has to be from the summer before I started junior high. I had gone to stay with my grandparents for 2 weeks that summer; they lived in a very small town, Bertrand Nebraska, with no more than 700 people. My grandmother helped me plan a class reunion with all my classmates from kindergarten and first grade. I treasured these kids, they were my first friends. I hadn't seen these kids since I left this town after first grade.
It was a pool party at the local pool, and every classmate but, Katie, my childhood best friend showed up! Even though swimming was difficult for me, my grandmother put me in the pool, and just let me be a kid! I remember I got splashed with so much water is was as if I was going to be taking all the water in the pool with me. Time flies when you're having fun, because before I knew it the party was over. I wanted to cry, I had a very good feeling that this would be the last time all of us kids would be together; and it hurt.
At the same time I felt selfish, I looked back and could see my grandmother just sitting there at the poolside just reading a magazine. Was she having fun, while I had the time of my life? She helped me plan all of this, helped me get ready for this event, drove me to the pool, and put me in the pool. She never asked for anything; she was more than grateful to see the happiness on my face.
My memories were never included, for the simple reason that the pastor never asked about mine! The pastor didn't even look at me! No, I was in a time of need. Is that not what pastors are for? It angers me to this day....Are my memories unimportant? Should it have been my job to insure that my memories were included? I just do not understand why out of everyone in the family it was me that the pastor neglected to ask about a special memory! Deaf people grieve too!
To make matters worse on the day of the funeral, I because of my wheelchair was forced to sit in the wheelchair spots of the church that were in the back; again I was isolated, and I was unable to hear the words that were spoken of my grandmother. My cousin, Stevie, offered to take me out of my chair and have me sit with him; but when he looked around all the seats in the church were filled. You see, my mom's family has around 400 people. What is with the isolation? Am I a young child who has made a mistake, and is being punished? Why am I always so secluded from my loved ones? This is my time of need too. I missed out on a major part of the grieving process; it is something I will not be able to get back. During the funeral, all I could see was the backs of others heads'. Because I couldn't hear anything, I felt like it was pointless for me to be there. Part of me wished to leave, and yet I didn't, I cared too much for her. This is a funeral that my grandmother planned, I watched her plan it, but I was unable to witness everything in action.
Unfortunately, about five months after my grandmother's funeral my cousin, Stevie, was killed in a roll over car crash. I felt left behind. He had been the only cousin who spent any time with me as a child. At my grandmother's funeral he was the only one to offer to let me sit with him. Stevie's funeral was extremely awkward for me; there was no one there to grieve with. His funeral was even more isolated than any other. His death was unexpected and I think that caused everyone in the family to isolate themselves and to begin to examine their lives more closely. Even though I did not have anyone there to support me during his funeral I do not hold any resentment towards my family. Having to grieve in a different way has made me a much stronger person, and I believe it is preparing me for something big in my future.
And yet people still wonder why I feel more at home with deaf people than I do among my hearing relatives. Our language is common, we understand each other. Being at a loss of control of the environment, that is, communication, people panic and retreat to avoidance. Deaf people are like the plague, or at least that's how the "normal people" make it seem. I am sorry we do not fit into your box of things that are perfect! I want to fit into my own box. But deaf people are still human beings with dreams, desires, and needs of belonging, just like everyone else. We have some of the same dreams everyone else does...having a good job, having a family, having something to be proud of. For us we must work twice as hard to get those things. And yet, that is ok with me because I know that I will appreciate those things even more when I finally have them. I cannot think of any other way to say it, but that yes we have a disability, but please start looking at us in a different light. Put us before the disability.
For me I have one big dream. I wish to achieve normalcy while at the same time standing out. I want others to see me just another member of society while at the same time understanding that I do have a disability. My disability does come with its limitations even if that isn't how I make it seem. I know that I will never be able to walk unassisted. I have dealt with that many years ago; it is just hard for others to move on. The disabled like to be acknowledged, included, and encouraged, just as you do. Is it really that much to ask? Make us feel like human beings too. We have bad and good days, just like everyone else. Find a way to make it easier for us to fit into your world. Sometimes we like to just get away and be with those that we relate to. We are sorry if you feel left out, but we are all too often left out as well. And we are sick of it!
There is no at all reason to feel sorry for us, we as our own separate culture almost, are happy with our life. If I were to wake up tomorrow and no longer have my disability I would not be myself anymore. It is because of my disability that I have done the things I have done, met the people I have met, and why I am at the place in my life that I am at. I am thankful to whatever grace has given me this disability; I have never felt that it should have been someone else.
It is all in destiny, I have a reason for being here. I am here to make life better for those that follow me. I advocate for the rights of individuals with disabilities, in any way possible. I am a member of Americorps, which is a program that improves social issues along with other issues through volunteer work.
Everyone has their own outlook on life and I know that not everyone else who has a disability looks at their life in the same way that I do; it is too bad. Many people discourage so many of the disabled that have so much potential. I hope I am able to change that in my lifetime. It is up to those who see that potential to help us feel like we belong, include us, and just be our friend. If you know someone with a disability, never tell them they can not do something, it just gives them more of a reason to prove you wrong. I believe that the disabled people are there are born with this personality trait that makes them want to do something if they are told they will not succeed. If only all disabled people listened to it, many of us could accomplish so much if they could just see it. I live by a certain philosophy...Give disABILITY a chance. What does that mean? I am not sure what that means to the "normal" ones, but to me it has a special meaning. Every time I think of disability written that way it reminds that I cannot give up...ever. It tells me that I can do anything, and all those people who say or think otherwise have not taken the time to expand their minds.
Every bit of that is true, please ask any questions you would like. If you don't ask, you will never learn. I am open about my disability and how it has affected me so no worries.
