What would a person profoundly affected by multiple disabilities including autism have to say if he could talk? How would he describe the details of his life? What would he say are his guiding principles in life? What would he say he has learned throughout his life? What advice would he have to offer? A Quality Life offers a peek into what one man, Cory, may have to say. It is a collection of stories about family, living with disability, and connecting with community. It includes stories written by Cory’s Aunt Chris, as well as stories written from Cory’s perspective as imagined by his Aunt Chris. Join Aunt Chris in this celebration of Cory’s life. "...I read your book...I was warmed and inspired. One of the highlights of my life has been knowing, and knowing of, families like yours...I salute and honor Cory, his mother, you and all the other fine individuals who made his integrated life so much better than the one he would have experienced if he had been segregated. Thank you for sharing this important and insightful story." — Lou Brown, Ph.D., University of Wisconsin-Madison, co-founder of TASH
A Quality Life
A Person Profoundly Affected by Multiple Disabilties: A Life Profoundly Affected by and Affecting Those Who Come in Contact with HimBy Christine T. SeilerBalboa Press
Copyright © 2012 Christine T. Seiler, PhD
All right reserved.ISBN: 978-1-4525-5305-4Contents
Preface...............................................................................................................................ixIn Profound Appreciation by Aunt Chris................................................................................................1Finding Cory's Voice by Aunt Chris....................................................................................................7A Quality Life by Cory Seiler as told by his Aunt Chris...............................................................................11Inclusion/Exclusion: Special Programs and Places for Grandma, Grandpa, and Me By Cory Seiler as told by Aunt Chri.....................23The Pottery Gang by Cory Seiler as told by his Aunt Chris.............................................................................27The Line Dancing Gang by Cory Seiler as told by his Aunt Chris........................................................................35Not Always Easy, But Always Worth It by Cory Seiler as told by his Aunt Chris.........................................................45Inclusion: Feeling the Fear and Doing it Anyway by Aunt Chris.........................................................................49Going to School with Kids like Cory by Aunt Chris.....................................................................................55A Graduation Story by Aunt Chris......................................................................................................57Being a Significant Other by Aunt Chris...............................................................................................61Living the Life at 39 by Cory Seiler as told by his Aunt Chris........................................................................65Rules to Live By By Cory Seiler.......................................................................................................73About the Author......................................................................................................................75
Chapter One
In Profound Appreciation by Aunt Chris
"Profoundly affected by multiple disabilities" this is the way we have come to describe my nephew, Cory, in situations where describing his level of disability is helpful. I remember being told that they no longer use the label "profound," but now group these individuals within the "severe" category. I remember noticing that the textbooks that were about teaching those with severe disabilities didn't include pictures of kids like Cory. Kids with severe disabilities would seem to be "higher functioning." What I soon began to appreciate was that the label "profound" more accurately describes our profound inability to have a clue what abilities are present in an individual at this "level of disability." I wonder if it wouldn't be of more value to keep a label that reminds us that for these individuals we are more likely to see so much less when there is so much more. What I do know is that I profoundly appreciate what Cory has brought into my life.
Our lack of ability to see these individuals for who they really are was underlined for me on July 17, 1993 when we brought Cory into the hospital. The doctors had not started to explore what was wrong with Cory. They hadn't determined that he was dying. So, I couldn't understand why the doctor asked my sister, "Do we resuscitate?" Was it because the doctor just didn't appreciate Cory's quality of life? I wrote this letter to Cory that night. I read it to him the next day feeling that in some way he would understand me.
Dear Cory,
Thank you, Cory, for including me as one of those who gets to share "the look" with you when you want to let them know you care. You know the one I am talking about. The one where you lean forward placing your forehead against mine and stare up into my eyes with that ridiculously huge grin—which is actually an imitation of your mother's ridiculously huge grin.
Thank you for conversing with me about your favorite things such as lights "looh a a lih", planes "whaz ah?", and whether I need a sweater "cloz on?" Oh, and bridges and motorcycles too.
Thank you for sharing your routine with me the last time I went with you wheeling at the mall. I would have never noticed the mirrors on the steps without you pointing them out to me. As the old routine goes: "looh a ah", "whoz ah i ehr?", "Is that Cory in there?", "Cory i ehr". I guess I have to also thank you for harassing me about my fear of heights by wheeling next to the edge on the second floor. It shows me you know me well and love me—harassment being a Seiler way of showing love. (By the way, I checked with your mother. She says you don't do that with her so you have no excuses. Just like my reaction, huh?)
Thank you for putting up with my doing everything backwards when I take care of you. You know I love you (I tell you so, hoping you'll be understanding), so you accept my shortcomings. I know you're thinking, "That poor Aunt Chris. She doesn't know what she's doing."
Thank you for telling me I'm wonderful: "Wuuunderr!" when I finally get something right.
Thank you for always being there when I am down. I remember when I was just a teenager and you were three or four. I was upset (probably about a boyfriend) so I went to cuddle with you. You pulled me out of myself. You reminded me that there are more important things in life. There was love, and you loved me. I remember your first sentence: "I yu ooo ..." I love you, Cory. I am 32 now and you are 20. I can still count on you for a cuddle.
Thank you for showing me that there are people out there—especially kids—that are capable of looking beyond a person's disabilities to the person. Really, it is okay that your classmates ignore me when they say hi to you at the mall or when one cashes us out at the grocery store (being of the older generation I guess that is to be expected).
I believe that your being a student in regular education classes in your neighborhood high school, and being employed by the same employers as the rest of us, and exercising at the mall like other exercisers in the community has had a significant positive impact. Thank you for contributing to making my world a better place. (But I've often wondered, since you work at the same place I rent videos, couldn't you get me a discount or something?)
Thank you, Cory, for helping me to recognize that my notions of humanness and quality of life have been limited by my position of so called privilege. Without you I would have always measured quality of life by abilities and advantages. On one side of the fence the grass would have always been greener and on the other side of the fence—weeds. Never would I have been in my own yard enjoying the grass under my bare feet if I hadn't had you to set an example. I have always sensed a wisdom in your silence. You take life as it comes—recognizing the wonder in things I take for granted while taking in stride things I consider unthinkable.
I have watched you respond to those who reach out to you and ignore those who haven't come to realize what you have to offer. Just like me, you do not shine for those who do not believe in you. With dignity you choose to meet people where they are at. The more one believes in you the more you reach out. Those that think you are too disabled are ignored, but accepted, no matter how frustrating it gets. I know this because I see that although most have not recognized who you are—and only your mom has recognized your potential—you still see life as a thing worth celebrating.
I am honored to be a part of your celebration.
Love Always, Aunt Chris
Finding Cory's Voice
by Aunt Chris
It would be some ten years later that I would be inspired to try to capture Cory's "celebration of life" in short stories to share with others. I had wanted to write a book about the contribution people with disabilities make to our world but I struggled with how to capture the real contribution that they make. Yes, there is the touchy-feely stuff like teaching us compassion and tolerance for difference, but it is so much more than that. It is more down to earth than that. It is more concrete. It is more complex—and has more to do with their abilities than their disabilities.
One problem is that to learn the deeper lessons that people with disabilities have to offer you need to connect with them. And the greater their level of disability the closer you need to get to make that connection. My nephew, Cory, is profoundly affected by multiple disabilities: mental retardation, cerebral palsy, blindness, and autism. What I have learned from Cory has come from my seeking to discover his take on the world around him as I assist him on a day-in-day-out basis with his personal care. As Cory's aunt I am not his primary caregiver; his mother, Nancy, is. The degree to which I learn the lessons Cory has to offer—the contribution Cory has to make to my life and the world—is the degree to which I am responsible for assisting him in interacting in that world.
Not everyone can provide for the day-to-day care of someone with a disability so the question became: How do I capture what I have gained from my work with Cory for those who don't have someone like Cory in their lives so that they can share the lessons I am learning?
The answer came from an unexpected place. The television was on one day as I was preparing something for Cory to eat. The show, Crossing Over with John Edward, was on in the next room and he was talking about people with disabilities. I heard him saying that when people with disabilities "cross over to the other side" they will no longer be disabled. Nancy, Cory's mom, and I agreed: wouldn't it be great to hear what Cory really thinks about things? How would he think we were doing in supporting him? (Yes, there was a little concern that we may not like everything he would have to say.)
Several months later, and in the middle of the night (when all good brainstorms happen!) it occurred to me: Let Cory tell his own story. When I got up that morning I wrote the first piece "A Quality Life by Cory Seiler as told by his Aunt Chris".
No matter what your spiritual beliefs I ask that when you read this collection of stories you open your mind to "Cory's perspective". In these pages I have tried to honor Cory as the unique individual that he is. As I write I ask myself to imagine Cory's spirit—without disability—a life chosen so that we could learn from him. I try to capture, not just his perspective as he deals with day-to-day life, but also the perspective of his higher self, his philosophies, the lessons he has learned, and the things he hopes others will learn from him.
I believe there is much to be gained by your imagining what a person like Cory thinks not just about getting through the day but about the greater things in life. Whatever your beliefs, I believe that entering into "Cory's world" as you read these pages will be a journey worth taking.
A Quality Life
by Cory Seiler as told by his Aunt Chris
I am profoundly affected by multiple disabilities including: mental retardation, cerebral palsy, and autism. I am also legally blind (totally blind in my right eye). This is not how I see myself but I begin in this way because most people see me as profoundly disabled and many people see my life as one not worth living.
Although I would not wish a disability on anyone, I want to share with you some stuff about my life hoping that you can expand your understanding of quality of life and perhaps enhance your own life through this understanding as those closest to me have.
I wake up each morning happy (usually) to see the day. I wake up with the sun. (My Mom sometimes wishes I would sleep-in a little.) I love the sun—and light. I can see differences in light and although my speech is very limited I often try to pull those closest to me into conversation about lights. I ask them "whaz zat?" and they look to see what I am pointing toward and when they say "light" I laugh. That reinforces them for getting it right. I have taught those closest to me to label a number of things in my environment in this way—and usually they get things right—and I laugh.
Because of my limited speech I have had to teach my supports how I like things done by doing a lot of pointing and making sounds—and sometimes by getting mad. They now know that I have a rule about doors: they need to be closed all the way or open all the way—and what is open always needs to be open and what is always closed needs to be closed. Now if I see a cupboard door open and can't get to it myself I can point to it and grunt and they will close it for me. I thank them by saying, "Wuuunderrr"—another reinforcer I learned to use to teach them. I learned this from my mom. She would always say, "Wonderful" when I was learning things from her. It made me feel good so I now use it with my supports to make them feel good when they do something I like. It is important to make people feel good.
I was talking about how important light is to me. I like to sit by windows, I like to point to my shadow—and make people talk about it: "Whaz zat?" And, weather permitting, I like to sit out on my patio in my rocker. There again I can point to things and see if my family can label them.
I love it outside. I love the feel of the sun, and, when it happens, the breeze—although if it's too breezy I ask for a sweater: "coze on". Sometimes I don't really want a sweater, I am just engaging in conversation. Because of my limited speech my supports need to pay close attention to me to try to figure out what I really want. If they pay close attention they usually do pretty well.
Probably my most favorite thing is going for long rides in the car—preferably with the windows down! My mom's new car has automatic windows so she has taught me to open my own window. Sometimes she regrets this because I open the window even when she has air conditioning on. Although, all she has to do is tell me that it's too hot and close it herself and I'm okay with that. I probably could learn to close the window myself, although it is more difficult to do that—and frankly I'm not really very motivated to do so. From my perspective the window is better down; hot or cold, I love it. Cory on the go
Back to my love of long rides—I find long rides relaxing. They are like therapy for me. As I begin them I still may be a little anxious because I am wondering (and worrying) how far we'll be going—I'm hoping we'll be going for a long ride. Eventually I just settle in and relax. When the car stops as we are riding along I always check to see if my window is still down because I do not feel the wind anymore. Then my Aunt Chris will remind me that we are stopped at a traffic light. (My Aunt Chris tolerates heat better than my Mom so I am more likely to get to have the windows down when Aunt Chris is driving. Aunt Chris loves to have the windows down too.)
Another thing I love to do is go exerwheeling at the malls. When I was in school the teachers thought I would not be able to learn to run a manual wheelchair that wasn't adapted to be operated by my left side only because I couldn't use my right side very well. But my mom wanted me to get a manual chair for that very reason. She believed it would be good for me to learn to work my two sides together. I have memorized my way around our malls. At two-story malls I'm sure to hit all the elevators. I love going up and down. Anyway, it has been years now that I have been exerwheeling at the malls. People at the malls have come to expect me.
Sometimes mall employees or other exercisers say hi as I wheel by. One mall employee even took the time to learn how to get me to say hi back. (If someone puts their hand on my shoulder and sticks around long enough I will say hi back.) Saying "hi" has been something my mom and supports have been working on with me. It is really hard for me to say hi in response to someone saying hi to me. First I have to notice they're talking to me because I can't see them (that's why the hand on my shoulder helps). Then I have to search for the right word. (Sometimes I say "Co-y" instead of "hi" because that is another word I have learned.) Then I have to say it loud enough for people to hear. Usually by the time I get it out people have pulled away because they don't want me to feel pressured. Or they may be saying a kind word just as I say "hi" but I haven't spoken loud enough for them to hear me through their words. Fellow exercisers at the mall will probably never hear me say hi back because they say hi and wiz on by. I don't mind. I am glad they say hi and pleased to just keep wheeling myself. I do sometimes say "hello." Saying "hello" is another word that I just came up with on my own (that bewilders my mom) and my supports picked up on this and have been working on this with me.
I have what some call echolalic speech. That is: I repeat the words I hear. You will often hear me say, "Are you done?" I am repeating a phrase I have heard a million times. (It originated in my early days of toilet training. You fill in the blanks.) Sometimes when I say this it seems to fit the context of the situation—like waiting in a check-out lane. I don't really mean to be rude. I have found too that this phrase works well to communicate that I need help with something or that I want something to be different—or to end or go away. Sometimes my family and supports work really hard to figure out what I mean. Sometimes people think I just said it because I can.
Probably one of the most embarrassing times to my mom is when she has to take me into the ladies room to go to the bathroom and I say loudly in my deep male voice, "Are you done?" Sometimes ladies reply from stalls, "Not yet!" probably thinking I am a maintenance man. This is the phrase I say most clearly. My female caregivers would probably prefer I say "hello" more clearly!
Again saying "hello" is something I have been working on. In the beginning my Aunt Chris decided that perhaps I would increase my use of the word "hello" if I heard it more often. This is sort of complicated to explain, but stay with me. First my Aunt Chris noticed how she and other supports pick up on what I say and copy me—they repeat my words and even my intonations. It is similar to what happens when adults interact with babies who are learning to talk—it just happens—no one intends to do it. For example, my Aunt Chris would find that when she was showering me she would respond to my repeatedly saying, "Are you done?" by singing, "Are you done? Are you done? Are you done?" to a familiar tune. Aunt Chris doesn't usually sing when she is showering herself so she cannot be expected to be too creative! She doesn't know why she sings when she is showering me. Anyway, first it occurred to her that she was probably reinforcing my "all-doning" (That is what we have come to call my frequent use of the phrase.) when she made a song of it. Then it occurred to her that perhaps it would be better to reinforce my use of the word "hello." I had said "hello" on occasion but wasn't using it regularly and she thought people may prefer hearing a "hello" rather than a "Are you done?" (Once I may have intimidated a government official at a public forum by clearly and loudly saying, "Are you done?" He may have preferred a "hello.") Anyway, now if Aunt Chris finds herself singing she will quit singing the "all-done song" and start singing her "hello, Cory song". That's as creative as she is going to get!
(Continues...)
Excerpted from A Quality Lifeby Christine T. Seiler Copyright © 2012 by Christine T. Seiler, PhD. Excerpted by permission of Balboa Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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