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. Seiler

Balboa Press

Copyright © 2012 Christine T. Seiler, PhD
All right reserved.
ISBN: 978-1-4525-5305-4

Contents

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....