Carpet at the CB has transcribed Clay's speech from the Voices for Change Gala Benefit for the BAF held in Honolulu on February 25.
…We're blessed to have so many volunteers who - so many people who are so passionate about the mission we have here at The Bubel Aiken Foundation. So many volunteers across the country who are willing to work with us to create awareness and we're so grateful for their support and for your support for (building that?) with us, as well. Thank you so much for coming tonight and for all that you do to help The Bubel Aiken Foundation, as we open doors and open minds every single day. So (give yourselves?) a round of applause for that.
For those of us who are involved in education - and that means all of us, whether it's a teacher or a parent or a student or an advocate - if we're lucky we learn quickly that education is not about learning how to make a living; instead, it's...about learning how to make a life. And for us at the foundation that's what we try to keep in mind as a philosophy. It's all that we do and all that we plan to do, and it is the very essence of inclusion. Inclusion's so much more than what some people would reduce to measurement. It’s more than test scores, it’s more than class sizes – in fact, its benefits are immeasurable (to all the students?). Including individuals with disabilities in every aspect of life, working towards and, when necessary, fighting for equal access for all (tells me?) and hopefully you that we’re embarking on the last great emancipation campaign of (inaudible). Inclusion is more than civil rights. It’s about human rights. (applause) (Through?) the step of creating awareness, we’ll work to change attitude and we’ll succeed in changing the behaviors that for too long have excluded other young people from all that life has to offer. (We wish?) to engage not only this generation of young people, but all people – all generations – to move beyond the passive concept of tolerance and towards the very active concept of full acceptance, by using strategies that empower typical peers to be supportive in a variety of settings and allow children who might otherwise be at risk because of their disability, they can become managers of their risk. That’s a very important phrase that we like to use here around the foundation, being managers of risk and not being at risk because of a disability or because of a special need, but managing that risk and being a part of a full, inclusive society. But by developing academic adaptations and social participation resources, we can foster a collaboration between special education teachers and general education teachers, and they can plan and implement differentiated instructional practices that go (alone?)…go far beyond parallel activities – and we’ll talk a little bit more about that or I’ll mention it a little bit more in a minute – they can go far beyond parallel activity choices for the classroom. The children we hear about, the children we work with, the children we hear from, they cry out for all of this stuff. The frustration from these individuals, from their parents, they contact us every day and tell us how much they long for this, how important this (exclusive-happens…?) this inclusive environment, the opportunities are important to them. And educators (seek?) the exact same thing; they speak of training and support that’ll help them - that will allow them - to learn and allow them to help others learn and not just help others learn, but to know who to help and when to help and how to help. And so we’re committed to this.
I received a letter from a sixteen year-old woman named Allison, and it happens to be right here…(laughter…Clay again, inaudible…more laughter)…with cerebral palsy, and she had taught herself to be an advocate, not just for herself but for others, for other who like her – she uses the term, the word “differently-abled”, and her story is one of combating the harsh reality of old attitudes. And basically that’s just continued to get in the way of the rights that are rightfully hers, even by law - the equal access rights – and so she 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 its 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 their 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?
We received an email from a, from MaryAnn, Sam’s mom, and part of what MaryAnn wrote:
“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 (group?). 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.”
Heavy stuff. Pretty-pretty amazing that that type of thing still goes on, and in not just Sam and MaryAnn’s community, but it goes on all across the country. And children of all ability will be the change that we seek in the world and that’s what we’re working for. These children want to help, too. We have the Able to Serve awards that we’ve talked about and how we’re able to take children or allow children who do have disabilities and allow them to better their communities and better their environment through these awards. So often we consider children with disabilities or individuals with disabilities as a population that we have to serve, that we have to help, and they, these children, have just as much and often times more insight and have more ability to help their communities and help those in their communities, and that’s what the Able to Serve award is about.
And actually we have another letter here…from an eight year-old named Jerry…he kind of speaks to this insight that children have and one of the reasons that we’re so supportive and so adamant about the importance of these Able to Serve awards. You’ll see in this letter how insightful children can be, how insightful young people can be whether – despite what their disability or ability is. Jerry is eight years old, and he 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.”
Very mature for eight years-old, I think, Jerry is. On our site we have (inaudible) "People-first" language that will help Jerry keep his promise. At eight years-old Jerry demonstrated a patience toward answering what’s unsettled in his heart and a love for the very questions themselves. The first basic human right is to be seen as a person before anything else. (Defined?) by one humanity. It’s a simple request that we can all honor. If an eight year-old can make the promise, I know that every single one of you can as well. So I encourage you to go to the website and read about the "People-first" promise and "People-first" language and the importance of "People-first" language and make that pledge. And if you’ve already done it, thank you very much. Continue to do that in your community and with people around you and convince those who are around you to do it as well. It’s extremely important.
Surprisingly, the question comes up quite often by parents with typical children who want to know why their children should be in a classroom with children with disabilities. Why should their child be in a classroom, and of course it’s going to hold them back. They say the typical children are going to be slowed down, their test scores are going to be down, they’re going to suffer. How will they get into college and get a good job if they’re held back by all the children with disabilities? Separate classrooms are more equal.
So Janine sent us a letter…it was an essay that her daughter Kimberly wrote. And Kimberly writes this one. Kimberly says:
“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).”
Kimberly, another young lady very wise beyond her years. She’s learned – she’s picked up on something because of her brother that is a simple, simple truth. Children and individuals with disabilities have so much to offer. They have so much that we can learn from them, that individual, typical children can learn from them. It’s about learning how to live, learning about -about like I said earlier – it’s not about learning how to live, it’s about learning how to have a life. Learning how to own your life and to be an active part of life and the world.
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 (inaudible)? 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 note right here (inaudible). It celebrates for all of us not only (grid work?), 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 picture 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.
Unfortuantely I wasn’t able to be in their class but thanks to the foundation, their class is with me and (with all?). Thank you guys so much (for what you do?). God bless you, Mahalo. Thank you for listening.
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