Saturday, May 10, 2008

Kids are the future

I recently received a e-mail from someone who had listened to the podcast I was doing a year or so ago. I thought I would share what they had to save not to pat myself on the back but to share the story she told about visiting some children at an elementary school. This individual is disabled for yourself and was there to speak to the children which I believe were also disabled. I believe it's important for us over disabled people to try to help the younger ones get a good start before they have a chance to have society put any sort of limitations upon them. Before I start to ramble this is what she wrote: Hi Dwight, This is going to be long, but you've put in the time for advocacy, so you deserve some appreciative writing in return. At the Maryland rally to close Rosewood institution last October, we thought we might like to fold our stories and demands for civil rights into paper airplanes and fly them over the fence into the Governor's back yard. "That's another thing I never learned to do, next to standing ovations and high-fives," said a quadriplegic man. Governor O'Malley declared a program for its closing in January of this year. Sometimes showing up is more important than whether or not you do everything that happens there, eh? I wish I could have taken a photo, but the imagery is like this: lines of people in wheelchairs, or with walkers, unsteady gaits, and all their assorted aids and advocates, storming the State Capitol building in Annapolis, rolling by police officers, exercising their rights to rally, speak, and petition the government. I work for an agency in Maryland that helps people with cognitive and developmental disabilities achieve full community life. My partner works with two brothers living with MD who work on a self-employment project. They own their own multimedia business. I'm a geek, so seeing these forays into technology are the most exciting things in the universe! Your CripCast project and Blogspot are wonderful. I am up late because tomorrow I have a meeting with my college disabilities services coordinator and I am nervous. I am struggling to get through school at the complications of my own health. I want to share with you the following things I have learned in a lifetime of working with people who have disabilities, and ultimately finding myself in the same situation:-I am incredible.-Life is harder when you need extra help to get through it.-People with disabilities are so patient with each other, but often it's hard to be patient with ourselves.-I have confidence in all my friends and coworkers with and without disabilities, but their confidences in me often seem to fall short. I have to do extra work to reassure them of my capabilities and to make sure they also understand my fears.-I would never have become so creative if it weren't for the way my life has been. I have always made myself available to people with disabilities. I have always volunteered and stayed active, advocating here and there. Now, I need the advantages I've worked to preserve. This is a big change for me. I think of myself as an activist. But now that I'm in it, I am compelled to do even more than I did before. I suppose it's just the peak point that we all reach where it's sink or swim. So I've started a YouTube: but it's still kind of a side project while I try to get my life together. I am meeting with people and researching. When I pose in photos, I don't take my braces off of my hands or my ankles or knees. This is what I look like, and if people want to be a part of my life, they cannot edit out the parts they don't like. I read about your Trach... I know they're tough to work with even if your hands work to keep them clean and comfortable. You'd think the technology would be a little further along by now... what kinds of changes would you make to a Trach? If a person has a cognitive disability on top of all of it, do you think there could be some kind of blinking light to flag for them when they can speak? Today I went to 7 classrooms in a local elementary school to explain what it means to use adaptive technology, assistive technology, and why information technology is a growing field for people with disabilities. It was really hard to put the lesson together. I'll paste my rough write-up: -=-=- The wiggly one in the red shirt had something on his mind. His attention peaked when I pulled out my IBM Model M keyboard and talked about how people who think differently do a lot of the same things, like recycle old keyboards. The child in a light blue t-shirt with an audio headset accommodation thanked me in ASL after the most important lesson was over. He was 6, had autism, and knew exactly what I was doing. THANK YOU! He screamed. This is the most incredible moment I have ever experienced in explaining disabilities. Every child could relate to being different. Howard County is privileged, and still, some children were invisible. It hit hard when I saw children left out. The boy in blue was taken to the back of the room while I passed around an ethernet cable to show what it was like to be connected to each other. One at a time, each child passed end over end, through the tangled pile of kids, so everyone had a chance. Two girls in the back row and the boy in blue missed a chance. I started over, and the two girls got the cable this time. “Is that everybody?” I asked. “Yes!” they said, glad they’d done it again and gotten everybody. “NO!” said another boy. “Who didn’t get it?” I let that boy share the cable with the boy in blue. The boy in blue passed it on, and the cable made its way back to me. The other students learned that it takes an extra effort to think of everybody, that they sit in different places or have disabilities, or they’re just not outgoing. They watched their classmate stand up, reach out to one who had no chance, and make sure everyone was included. Some hands meandered like finger painting in thin air, while others rocketed up and down as I asked questions: who likes video games? Who turned in a library book today? Last week? Who has books at home? Who’s rich? What does it mean when we use something again? Who would rather use a telephone than a calculator? Who uses a screwdriver? Who thinks about things? Who likes to remember things? Who reads? Most hands went up when I asked who had seen a wheelchair. “How do you feel and what do you think when you see someone in a wheelchair?” The answers: they might have a broken foot, they might have a broken arm (we tried that one again), they might have to stay there, it’s sad. The answer I expected was what my generation gave me: there’s something wrong with them. No one raised a hand when I asked who had heard the word “disability.” I was about to encode young children with a word that, if delivered wrong, was going to carry a life-long stigma. Teachers, computers, parents, and the library are reportedly where kids go for answers. No student said they ask their classmates. No hand ambled upward when I asked if anyone could think of at least one classmate that they thought was smart. Today children heard a new word: Douzo. I said it over and over again. “Douzo, douzo, douzo. Doesn’t that sound different?” The girl with blonde hair and blue eyes whose parents spoke Japanese sat alone at a table, and I don’t know why she was there. She didn’t get the yellow ethernet cable. When somebody brought it to her, I let her tell the classroom what Douzo meant. If they hadn’t reached out and included her, they would not have learned from her that douzo means please. They might not have unlocked that from her, and she would not know that being able to read is an accomplishment. She would not know that she could give information to other people, even so young. What a sense of self-worth, to know something and share it at age 6. She was a teacher for a moment, and if no one had reached out, she would have been silenced, excluded. “Um, what’s wrong with your hands?” asked the wiggler. Joyous day, I thought, this boy understood my lesson on asking before you feel sad about someone’s disability, because you might just not understand. I had just spent a half hour explaining how I use technology to solve problems, but I hadn’t said a word about what was “wrong” with me. I didn’t say the word, it didn’t matter. What mattered was what was wrong: my thumbs don’t hold together like other people’s thumb bones, and that I’d used technology to fix it: splints. It didn't compute for the students that a person standing in front of them would talk about what it's like to be in a wheelchair. Could someone really only need a wheelchair some of the time, and not have a broken leg? I had set the children to wondering before they decided that sad was the right way to feel. That was my goal, just to get them thinking about it. I didn't have a lot of time to turn around their emotions; they'll have to figure that out on their own. But still, success! I taught everything I am today, and where I come from: multilingual, technological, strong, poor, creative, living with a disability, a good listener, a reader. Every child was one of those things. There is not one child I didn’t reach. It didn’t take a plenary session, money, a Federal Act. It took a bunch of kids sitting on the floor in a room, and some old technology I didn’t throw away. I could learn anything, change my world to match my needs, think about other people and solve problems, and earn enough money to make a living. I don’t know who will remember me, but I do know that every child I saw this morning got an “a-ha!” moment about themselves. I hope they will pay it forward. -=-=- I hope this little note has given you some encouragement for the time you put in to reaching out. The MD community, especially, has never had the chance to get together and advocate. I'm so glad you are speaking up! I have so much hope for the future. I hope you can know for at least this day that you have reached an attentive ear, and that there are people in it with you, even though you can't see us. I think kids are getting the point at younger and younger ages. Here in Maryland, the schools are wildly diverse! I've never seen anything like it! So they all know what it's like to be different. So many of them, though, didn't know that a wheelchair is a good thing. I thought of tying their legs together and having them wiggle around until they knew how much of a relief it would be if they could use a wheelchair. :) Have you ever wanted to do a lab like that? Or put vaseline on sunglasses, put them on the kids, and have them write a letter, address and stamp an envelope, fold and stuff the letter? If only I had more time. I'm gettin' kinda rambly. The point is really to thank you and share some of the things we're doing up here to do our part. Keep it up! Be well,Sama

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