Identical Cousins

To Write Love On Her Arms

The rest of the story: http://twloha.com/index.php Or on YouTube: http://www.youtube.com/watch?v=OHaFrS3TE04

McCain should fire Charlie Black

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: www.youtube.com/ufo8mykat 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

Live Like You Were Dying

I had a really great day yesterday and thought I would share it with you all. I started my day at about 6 a.m. with my morning medications and breakfast. I had the most delicious breakfast. Because of my condition I sometimes have trouble swallowing so if I am eating a food I know gives me trouble I have to purée it. I mention this because I used to love an omelette with kickers from Domino's pizza but when I lost some swallowing they would get stuck in my throat choking me. I'd assume puréeing would be rather disgusting in this case but was pleasantly surprised. It gave the eggs a lot of flavor and actually made them moister which gave me an easier time when eating. This might sound mundane but for someone in my situation and it means a lot to find another enjoyable food I can actually eat. After breakfast and a nice bath it was time to head to church. This week was part 2 of a four-part series on living like you were dying. I'm sure you have all heard the song by Tim McGraw. Part two was all about speaking sweeter and the effects that our words have on each other. Also that we need to choose our words carefully because they can either build someone up or care someone down. It was a very good service that made a lot of good points. At the end they interviewed (on a video) a man with ALS talking about how he regrets the bad things he said in his past and not seeing more good things especially when it came to his wife. It was very moving and I'm sure quite a few people needed tissues afterwards. After church we took Emma (our one year old Boston terrier) to a place downtown called city place. It's basically an outdoor marketplace but with very expensive stores. A great place to walk around especially since it was such a beautiful day. This was the first time we have ever taken her to such a place so it took her a little while to calm down. I think she couldn't figure out why it reasonable person she saw wasn't paying attention to her. She kept trying to fight the leash to go over to people. Also she kept trying to chase pigeons. At one point my dad left my mom and me with Emma while he walked over to the Starbucks to get some coffee. The dog started crying like someone died or something. After that she seemed to calm down and several people came up to ask about her. Mostly older couples. I told her afterwards she needed to get younger females to come over. I'm sure this was not the most exciting posts but it has been so long since I've posted I felt the need to write something to get back in the habit.

Transitioning to a trach

I had a comment posted on one of my posts but I could not figure out how to reply to the person. Either you can't on blogger or I am just not seeing it. So I will write a brief applied without (hopefully) giving away this persons information. Basically, the person has a fresh trach (a few weeks ago) and is feeling a bit self-conscious about people staring. I apologize ahead of time if this person does not appreciate this blog post but I thought it important to respond to him. I have been trached since I was about 19 years old and was very self-conscious about it for quite a while especially when going out in public. I always felt like that is all they could stare at. After some time and becoming comfortable with it I believe at least 50% of the time I was being overly sensitive. I by no means mean to imply that you are wrong for your feelings. I know they are very real. I find that when someone stairs no matter what the reason my best response is to simply say hello. It will do one of two things; embarrass them for being caught staring and being rude or put them at ease and let them realize it is okay to talk to you. I find that most people would like to say something but are afraid because they have never had to deal with a situation like that or they fear that asking you about it will embarrass you. It will take some time to get comfortable with both the trach and people sometimes staring. Part of the problem is that so many things in society program us to believe that you and I being disabled or different somehow makes us inferior to others. This can apply to anybody not just you and I. I have a friend who is overweight and has the very same issues when it comes to being out in public. I wish I could give you some trick to just make all those feelings you have when you go out in public and/or people stare go away. Unfortunately, that is something that you will have to work out for yourself. You have to find a place within yourself where you can feel and realize that you are not inferior to anyone and have just as much right to do the things you do as they do. As far as not being able to speak in complete sentences, I believe that it's not uncommon. You are lucky actually because when I was first trached I could not speak for several months. They had given me a cuffed trach but as soon as I switched to a cuffles trach I was able to start speaking that day. I had to learn to time my speech with my ventilator when I was on it. When I was not on a ventilator it wasn't quite as bad but still could not speak to the length I was used to. I was not sure by the person to comment if they were on a ventilator or not. Or if they were using a Passey-Meur valve (I'm sure I didn't spell that correctly). They make a Passey-Meur valve when you are not on the ventilator and one for when you are on a ventilator. If you are not sure about this just ask your respiratory therapist or whoever supplies your medical supplies. If the person who commented would like to speak to me more on this than they can contact me at my Hotmail address which is kuaika@hotmail.com God bless you and I wish you the best!

A Beautiful Weekend

I had a great weekend. It was a beautiful day on Saturday. Only about 72° or so with the sun shining. Managed to wake up to buy 10 a.m. which is good for me. Was out of the house by a little before 1. We headed to the movie theater and saw The Bucket List. It started out a little slow but turned out to be a great movie. But hey, how could you go wrong with Jack Nicholson and Morgan Freeman? It was good therapy for me with the recent death of my friend. Some of it really reminded me of them especially since we used to do quite a bit together. Even without that it was a very good movie. You'll laugh and you'll cry. Afterwards we had lunch at Friendly's. While I did not have room for dessert I made sure to get something to go to eat later as a late-night snack. It was some sort of chocolate fudge Brownie dessert. It was so rich I could only eat half of it if that. Then after getting home and resting for about an hour I was able to watch the online Saturday night service at my church. It was good and was able to chat with some people from the church afterwards. Then this morning my brother came for breakfast and brought his new puppy. His name is Prince and is Boston Terrier mixed with boxer. Him and my dog Emma wrestled almost the entire time he was here. So it was a great weekend all around. Until next time.