Clay's speech from the Pacific Rim Disabilities Conference has been transcribed, as much as possible, by
Mom11 and posted at the CB.
Maybe someday the transcripts of Clay's and other speeches given at the VFC galas will be available on the BAF website. I have even written to them with that suggestion, as have, I'm sure, many others. Many thanks to Mom11 for transcribing. Here is what she said about her efforts. Here is a transcript ...sort of. Please note that I copied some sections from Carpet's transcript because content is essentially the same. Also - some audio was very choppy and made it difficult to get entire sentences. I've noted this where appropriate. The notable difference was about federal laws ( IDEA and 504) and a particular Hawaii lawsuit. So - disclaimer - this is not word for word an official transcript and should not be disseminated as such.
Hello. ( inaudible) I don’t know much Hawaiian so "Aloha" is pretty much the extent of…Mahalo we’ll do that later too. I am glad to be here in Hawaii and at the University of Hawaii and to the organizers of the Pacific Rim Conference on developmental disabilities. I extend a big thank you for allowing me to be here today to talk about some things that we are all, I know, very impassioned about.
For those of us who are involved in education and all that that means and that really means all of us. . .if you are a teacher, a parent, a student, an advocate… if we’re lucky we learn quickly that education is not about learning to make a living but instead it’s about learning to make a life. And for us at the Bubel Aiken Foundation we keep that philosophy in mind in all that we can plan. The very essence, the very essence of inclusion is so much more than what some people reduce to measurement. It’s more than class size, it’s more than test scores…in fact it’s benefits are immeasurable for all participants. And I’m sure that everyone here who is involved in the education and socialization of individuals with developmental disabilities is fully aware…. Inclusion in the academic setting is determined and expressed as a commitment to educate every single child, each child to the maximum extent that is appropriate…. in school, in classrooms ( inaudible)
It involves bringing child support services to the child rather than removing the child to the services. And it requires only that the child benefit from being in the class instead of having to keep up with the other students. So full inclusion, means that all students regardless of disabilities. or its ( ? ) will be in a regular classroom program full time. All services must be taken to the child in that setting.
Parents thinking what’s best for their child oftentimes get caught up in a discussion of mainstreaming versus inclusion. There’s a difference Too often the school district defines what it…. Determines based on what’s best for the school instead of what’s in the best interest of the child. And with that in mind we at the Bubel –Aiken Foundation think that its’ important to understand that there is a philosophical or conceptual distinction made between mainstreaming and inclusion. Those who support the idea of mainstreaming believe that a child with disabilities first belongs in special education department and the child has to earn his or her way into the regular education department…. has to kind of achieve or take it to a level that they deserve, I guess, to be in that mainstream environment.
But in contrast, those who support inclusion( inaudible) believe that a child always should be in the regular education environment and only be removed when the appropriate services cannot be provided in the regular () there’s and big difference. I mean its’ really exactly the opposite. Mainstreaming and inclusion are… contrast each other.
Including people with disabilities in every aspect of life and working towards and when necessary fighting for equal access for all, tells me and it hopefully tells you that we are embarking on the last great emancipation of the human spirit. Inclusion is more than civil rights its about human rights. ( applause) Yes. Absolutely. (Applause) together we can move through he steps of creating awareness and we work to change attitudes and we succeed in changing the behaviors that for too long have excluded people from all life has to offer. We wish to engage not only this generation but all young people and all people of all generations to move beyond passive tolerance and toward the concept of full acceptance. We’ll use strategies ( ?)…… typical peers supportive in a variety of settings. Children ( inaudible) can become mirrors of risk. Instead of being at risk they can be managers of their own risk. By developing academic adaptations and social participation resources we can foster collaboration between the special education teachers and the regular education teachers and they together can plan and implement differentiated instructional practices that go beyond parallel activities as the only choice in the classroom. The Bubel Aiken Foundation has been asking educators and administrators, as we build our programs of inclusion, what elements would assist schools and service providers in achieving those shared beliefs and philosophies that support that positive transition into a more inclusive environment. And we’ve heard many suggestions, the most common of which develop ( inaudible)…. placements…supports and services for all students. so that every student’s first placement is in regular education. ( applause) And then staff development must be made available as a part of every teacher’s and every paraprofessionals workday. Staff development is of the utmost importance. We suggest that areas of emphasis include integrated curriculum, emphasis on interdisciplinary teaching, multiple curriculum, life standard curriculum with friend ship building activities, leadership training, service training, character education.
Unfortunately the federal statutes that set forth the guidelines by which school districts are to include children with disabilities in the classroom leave several questions unanswered. First, how far must schools go...Second how important is ( inaudible) in making placements. And third, what are the rights of the other children. Right here in Hawaii….. the Maui public school student Jennifer ( inaudible). the federally guaranteed minimal educational and mental health services for Jennifer were not being provided. And it wasn’t just Jennifer who was being ignored. The case was certified under Jennifer’s’ name( inaudible)…federal law mandated.. And yet the class action suit ( inaudible) 13,000 students. Children were being seen for mental health( inaudible) in hallways. On having these classrooms in hallways in stairwells.. In Kona, an area below the average percentage of identified special education students ( inaudible) one . of the highest rate of children being suspended from school for issues related to behavior. They were being suspended from school for behaviors of a disability that federal laws are enacted to protect. They were being suspended for it. And they were being suspended for it. The case brought to light a shortage of certified special education teachers, speech pathologists and other certified individuals capable of providing these timely functional assessments and the development and the execution of plans matched to the needs of the child. So we ‘re making sure that adequate teacher education and adequate funding for teacher education.
And two federal laws that govern the education of children of disabilities are IDEA (Individuals with Disabilities Education Act) ( inaudible)…. and Section 504 of the Rehabilitation Act of 1973, both of which require that the state have in place an appropriate system of care that will allow a child with a disability the benefit of a free public education. Very basic rights, I’m sure you’d all agree. Under the IEP (individualized education plan) the IDEA requires that the IEP, to consider the placement in a regular classroom as a starting point in determining the appropriate placement for the child. If this is not the least restrictive environment for the child then the IEP must include an explanation as to why the regular education classroom is not appropriate. You can’t just decide and settle upon the fact that that child , should not be in a regular classroom they have to explain why. And to the credit of those people who proposed the IDEA, this approach is critical if the intent of the IDEA is to educate as many students with disabilities as possible within the regular education classroom. This particular aspect of the IEP and this goal of IDEA is vital in order to make sure that kids are included in the inclusive environment.. Under section 504, the rehabilitation act of 73, a recipient of federal funds, in general all public schools, must provide for the education of each qualified student with disabilities in their jurisdiction, with persons who do not have disabilities. This (inaudible) under the maximum extent appropriate for the needs of the student with the disability. Only after a demonstration that a child cannot be included with the use supplementary aides and services like this in this provision( inaudible). So only after proof that a child, after every single possible supplement is made .. every single possible accommodation is made…. it’s…. on ly then….. can we put them in a non-inclusive environment a special education environment.
In the (inaudible ) [ lawsuit cited above] case, Hawaii agreed to a number of conditions to settle the suit. The primary condition being that it had to place in the system a ….of federal laws. Are the services being taken to the child in the classrooms….
The children we hear from cry out for this. The frustrations of parents who contact us at the foundation every day and tell us how they long for this. Educators ( inaudible ) the training and support They want to help they want to know how it helps they are committed to this.
I received a letter a few weeks ago from a 16 yr old named Allison. I’m going to read it to you. Allison has cerebral palsy. She starts out so happy for people who have different abilities. Her story is on of combating the harsh realities of old attitudes and how they continue to get in the way of equal access for her even though it is written for her in the law.
Allison writes: ““I’m pretty hard to miss in my power wheelchair. I go places and do things like all busy teens but sometimes, I’m learning, people treat me as if I were invisible. I attended an NSync concert at the Rose Bowl with field seating. When I arrived on the field I was asked how I got there, and then I was told that I belong with ‘those people’ - meaning the ones who were in the handicapped section. My mom transferred me to the seat and brought my chair in the ‘those people’ section. Not long ago at the mall an adult asked what’s wrong with me and I really wanted to say, 'People like you!' (laughter…Clay inaudible) I’m learning that the world sees the chair instead of me. I think it’s harder to be heard as a person with a different ability than a non-disabled person. We all have differences and we all have a basic similarity. This is the desire to be loved and respected.”
And the struggles of parents seem to be the same no matter the state, no matter the disability, no matter the school system. Very difficult for parents to wait for opportunities for their children. It’s difficult for them to see their children left out of opportunities, whether it be because of school systems that are mired down in politics or who are facing financial challenges, waiting passively has proven not to be an option…and it's often – and early intervention is often the key to maximizing these opportunities for a child. The parents speak of, they seek a sense of belonging and the chance for their children just to be a part of regular life. Why should a disability exclude a child from participating in an activity that he or she would’ve participated in naturally if it were not for the disability? And why…do we not allow them to be included? Why do we allow such exclusion based - ? We don’t allow it for race - based on race or gender or creed or color, so why would it be acceptable to exclude a child from events based on a disability?
I received a letter from Sam’s Mom. She writes about her experience in Michigan.
“Tomorrow I have Sam’s IEP for next year. I’m already disappointed, and we haven’t even started. I found out today that they only have scheduled one hour for our meeting. The whole reason we’re having it in February instead of May like we used to is so the school isn’t cramming everyone’s IEP together in one month. Tomorrow they’ve scheduled three for the morning: 9 o’clock, 10 o’clock and 11 o’clock. Next they told me, when I went to visit the junior high classroom, that the children only go out for lunch and computers. The entire day is like that. They’re in a room with only profoundly disabled children. They have no typical role models through the day, unless a peer partner comes into the classroom. I was there when a peer was there and she didn’t even talk to the students; she just sat there the whole time. The children in the room now have speech that is worse than Sam’s. How’s he gonna learn? It’s making me feel so frustrated. They won’t even allow them to take PE with typical children. All children with disabilities must be in a special adaptive PE (class). We’re so behind. They’re still in the fifties when it comes to special education here. I’m gonna push for Sam to at least go to social studies and science. They can have the special ed teacher modify the lessons. If they’re learning the planets, Sam can learn that we live on earth while all the others learn about the planets. Or Sam can learn that Bush is our president while everyone else learns all the presidents. I know I’m going to come up against so much resistance, it makes me cry just to think about this school system and Sam in it. Say a prayer for us.”
[Audio very poor for this section] Any discussion (?) about inclusion should include several more questions. Do we now treat all children equally? Is anyone more or less… children of all abilities will…These children are the future.. They want to help they want to ask all types of questions . They are the change we want to see in our world. Because kids are born without prejudices. [ difficult to hear all of this]
I got a letter from, this is a moving one, from an 8 yr old. Jerry. Jerry writes:
“I signed your pledge to be nice to everyone, but I made a promise that I can’t do. I want to use the right words when talking about special people, but don’t know what they are. I was telling my grandma about my friend Jordan. My mom told me he has a disability called Tourette’s. Sorry, I don’t know how to spell it. (laughter) It makes him blink his eyes very fast and he can’t stop them, and sometimes he’ll say very bad words very loudly and (inaudible) to make weird noises. My mom told me when people ask what wrong with him to just say he’s just like you and me. He has a heart, but he just can’t stop doing all that he wants to. He (inaudible) and likes to play, but now my friends won’t play with me because I play with what they call ‘the weird boy’. I told Grandma about it and she said he was ‘retarded’. Mom told me that this is a bad word that people used (in the past?). She said it’s just like how people used to call African-Americans a bad word, but that people don’t know ‘retarded’ is bad. I need your help, so I can use the right words (to?) keep my promise.”
“Every day he gets up. He has to be helped in the bathroom. He needs to be cleaned, and eating his breakfast is really hard. He hates to eat. Sometimes just smelling food makes him gag. He smells everything. He gets dressed with help, but then they come to our house or he gets on a bus and he goes with them. They teach him how to walk, how to use a fork and a spoon, how to speak, and how to look at you when you call his name. He has no friends, but he is always busy. He hardly talks but most of the time when the phone rings, it’s for him. I’m talking about my baby brother. He’s three years old. Even though I’m older, I look up to him now and I probably always will. He’s my different kind of hero. He has autism. Every day is a struggle for him to learn how to do the things that we do like going to the bathroom, putting on your clothes, eating a bowl of cereal or just saying good morning. Instead of getting to play with a bunch of little kids like other three year-olds, he is busy inside classrooms learning how to be a person. Some people think that a kid with autism has no feelings. Not true. I say they have too many feelings. With my brother in my life, I can now see kids who have the same disability. I see how it is with them. I think about when my brother gets older, and I know he will always be different. I know that he’ll get laughed at, and I know he’ll not have many friends. All I can say is I feel sorry for people who will never give him the chance to shine. They will be missing out on the greatest thing in this whole world, and that is simply him. My brother’s awesome. He’s my different kind of hero, plain and simple. He’s made me see that not everyone is perfect. He taught me without even having to speak a word that life is what you make of it. Either you get up every day and do your best, or you get up and give up. And like I said, he’s only three years old but he’s so smart. He’ll probably never realize just how much he’s taught me, just how much he means to me, just how much I’ll continue to learn from him and how much of that I’ll use in my life. He taught me to be human and (inaudible).”
We are, as they say, the product of the choices we make. I challenge each of you to make the choice that leads to full access, celebrating the human rights we all deserve. When you see a child in a wheelchair, will you choose to see the child? Or the chair? When you stand in the presence of someone who cannot speak, will you choose to hear only silence? Or will you choose the tapestry that is found in the language without sound? When you’re facing parenting or teaching a child with a disability, will you choose to be overwhelmed by the challenges? Or will you choose to recognize a different kind of hero who brings you one of life’s most precious gifts – hope?
As you know, I’m unable to be in a classroom…I had planned so carefully…but now thanks to so many, I have the opportunity and the ability to be a part of a much larger classroom wherever I go. Last May I received this different kind of note. It celebrates for all of us not only the written word, but the language of pictures, which is the method this class uses to communicate, and they told me all they wanted to say. You’ll notice there are pictures underneath the words here. It says:
“Dear Mr. Clay Aiken,
“We’d really like it if you could come to our school and give us a performance. We read about you in our ‘News to You’ newspaper a few weeks ago. We read about your foundation. We know you are a very busy performer, but please come visit us. We hope to see you.
“Your friends,”
Their pictures are all here. Vanessa, Tom, Daniel, Martha, Diane, Kevin, Brett, Byron, Tanica, Ron, Skyler, Talia, John, Bradley, Carlos, Kim and Richard.
Unfortunately I wasn’t able to be in their class but thanks to the foundation, their class is with me and with all of us. Thank you guys so much for doing all that you do for children with disabilities. Thank you so much for being so involved.
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