The Saddest Post in the Whole Wide World

Adults with Down Syndrome, Aging, Community Participation, Courage, Disability, Down Syndrome, Education, Employment, Family, Friends, Inclusion, Inspiration, People with Disabilities, Special Education, Teaching, Western Carolina University 53 Comments »

Billy Schulz, 56. We are going to miss you.

William Robert Schulz

Kingsport — William Robert “Billy” Schulz, 56, born January 28, 1956, died peacefully on September 2, 2012, after a period of declining health.

Billy was a beloved and influential member of his family, and an ambassador of goodness wherever he went. His cheerfulness and optimism contributed to the communities in which he worked and worshipped.

In April, Billy received his ten-year pin for his work as a bagger at Food City, where he worked at Eastman Road and Colonial Heights branches. He was an active member of First Broad Street United Methodist Church, where he returned their warm welcome to Kingsport by welcoming church members frequently as an usher. He belonged to TeamMates and loved singing at One Thing.

Prior to moving to Kingsport in 2001, Billy worked in Cullowhee, NC, at Western Carolina University’s Hunter Library for 21 years as a security book handler. He was a member of Sylva’s First United Methodist Church, where he was a regular usher for over two decades. Billy graduated from Cullowhee High School in 1977.

Born with Down Syndrome, Billy’s special needs directed the career of his mother, Jane B. Schulz. Billy and Jane inspired thousands of people during their teamwork together, modeling for all how much can be accomplished in life with determination, humor, love, and courage. Jane wrote her memoir, “Grown Man Now,” about her life with Billy, who has been a devoted and generous caretaker to his mother in these later years.

From the Office of the Chancellor, Western Carolina University:
“In recognition of Mr. Schulz’s achievements, service and cultural contributions to the betterment of society, he was scheduled to receive an honorary degree, a Doctor of Humane Letters, from Western Carolina University alongside his mother, Dr. Jane B. Schulz. The award honors Mr. Schulz for not only developing skills, talents and creativity beyond his expectations but also courageously sharing his experiences in presentations at community, university, regional and national events to help dispel negative stereotypes of people who have disabilities and encourage all to seek their full potential. The honor will be bestowed posthumously during WCU’s fall commencement exercises on Dec. 15.”

A music, television and movie buff, Billy created an impressive collection of recordings, and enjoyed discussing these topics and telling jokes. He was a complex and spiritual person; his love and concern for others were boundless. His deep, abiding, and long-lasting relationships with others were inspirational and far-reaching. His loss is keenly felt by Billy’s communities and family. Surviving him are his mother; two brothers, John and Tom Schulz, and his sister Mary de Wit; their spouses, Dekie, Sheila, and Jos; Billy’s nieces, Carrie Schulz and Mary Geitner; and his nephews, Paul (Edna), John Robert (Christine), and Isaac Schulz; and Daniel and Warren de Wit.

A memorial service for Billy will be held at First Broad Street UMC of Kingsport on Saturday, September 8, at 3:00 p.m. with a reception following. Memorial contributions may be made to: The Jane Schulz Scholarship Fund / Western Carolina University / 401 Robinson Admin. Bldg. / Cullowhee, NC 28723; or to the Billy Schulz Memorial Prayer Garden Fund at First Broad Street UMC / 100 E. Church Circle / Kingsport TN 37660.

Independent Living (Part 1)

Advocate, Community Participation, Diversity, Education, Independent Living, People with Disabilities, Special Education, Teaching No Comments »

It is easy to forget that one method of housing for people with disabilities is still institutionalization in state facilities. Although this arrangement is gradually disappearing, it is still the only choice for many families due to lack of resources, family dysfunction, or other reasons.

Two years ago I was dismayed to learn of an event occurring in a state institution for persons with disabilities. The following article was, and is, my reaction.

Return of an Outrage

After five decades of observing, I thought it was over. I had hoped we would never again see headlines like the one dated March 27 on NPR.org: Abuse at Texas Institutions Is Beyond ‘Fight Club.’ The article described events in which staff members were charged with taking part in staging “human cockfights,” using residents with mental retardation for staff entertainment. Chronicled on a lost but retrieved cell phone, the evidence pointed to more than a year of staged late-night fights, some as recent as this past January, at the Corpus Christi institution.

My rekindled anger took me back to the 1960s, to revelations that changed my life. The first experience was made more real to me because of my son Billy, who has Down syndrome. I had just begun pursuing my goal to become a special education teacher. I wrote:

During that first summer, my class visited various facilities supposedly designed to educate children with mental retardation. A major event was the trip to Partlow, a residential institution operated by the state of Alabama. . . As a group, we walked into one expansive barn-like room, furnished with two long benches facing each other, no other furniture in the room, no curtains on the cloudy windows, and absolutely no stimulation of any kind. I stopped in the doorway, mesmerized by boys appearing to be around the age of ten or twelve, hands by their sides, staring blankly about them. This image was my nightmare for months to come, an image still present in my mind. I was so struck with the horror of “nothing to do” that I swore to myself, “That will never happen to my little boy.”

The second event occurred as I was progressing in my studies in mental retardation; I was shaken and outraged by the disclosure of conditions at Willowbrook, a Staten Island institution for children with mental retardation. Not only were children abused and living in squalor with little medical or mental health care, some of them were reportedly used as test cases for hepatitis studies. The nation as a whole was appalled when a young investigator, Geraldo Rivera, went into the institution with a hidden camera and revealed the unthinkable conditions at Willowbrook.

The Willowbrook expose was followed by a book written by Burton Blatt and Fred Kaplan, entitled Christmas in Purgatory: A Photographic Essay On Mental Retardation. As part of a research project at a Connecticut facility for persons with mental retardation, this book presented explicit photographs of residents being treated “less humanely, with less care, and under more deplorable conditions than animals.” In the Introduction, Dr. Blatt stated, “There is a hell on earth, and in America there is a special inferno. We were visitors there during Christmas, 1965.”

As a student, I felt sure that these dramatic disclosures would demand that residential institutions be carefully monitored and the persons living in them treated with dignity and kindness. The sad truth did not bear out my optimism.

When I became a professor in special education in the early 1970s, I took a group of students to visit a residential institution not far from our university. Although this was considered a model facility by many, my students and I witnessed an appalling procedure. As we were touring the grounds, we observed a fenced-in area where a large group of naked young men were being hosed off by attendants. We were appalled at the lack of dignity afforded these residents.

Almost half a century later we are still confronted with atrocities perpetrated on those persons most vulnerable in our society. Sure, in response to the article concerning abuse at the Corpus Christi institution, Texas state officials have announced steps to prevent more abuse. They intend to add supervisors to evening shifts, install security cameras in public areas at all 13 state institutions for people with intellectual disabilities, and to “continue to take swift and immediate action when abuse and neglect is reported.” But we know this does not address the real problem.

Originally placed in out-of-the way places, residential institutions were designed to protect the residents as well as the community. Such isolation seems to breed neglect and abuse that go unnoticed by citizens at large. The claim that this practice is less expensive for the state is not a valid reason for the continuation of such large, unmanageable facilities.

I have felt encouraged by the national trend leading to group homes, supervised apartments, family-supervised living, and other arrangements for people with developmental disabilities to live in communities and enjoy the rights of all citizens. In districts where this occurs, the population as a whole grows in many ways. The inclusion of persons with disabilities adds to the sense of diversity that makes us interested in each other and helps us develop sensitivity to the worth of all individuals.

The Texas incident reminds me that we must all be advocates for those less able to advocate for themselves. As advocates, we should be aware of past injustices, learn from our experiences, and be proactive in seeing that the past will not be repeated.

In future blogs we will examine alternatives to institutionalization. We will have several guest  bloggers who will describe solutions that offer favorable living situations for their family member who has a disability.

What solutions have you found or learned about? What questions or concerns do you have? Share with us!

Thank You, Students!

Teaching 1 Comment »

Since my last blog I have had positive, endearing comments from many of you, my former students. Do you know how much this means to me? I would have a big head if I didn’t know the whole truth.

Teachers are only as successful as their students are. You are the ones who inspired me, who gave me energy, who made my career possible. I used to walk into the classroom where you were seated, knowing that most of you really wanted to be there and were excited about the experiences that were to follow. You were concerned about the children you were preparing to teach and eager to know more about them and the teaching strategies that you would employ. You were creative and industrious and brought out those qualities in me. And you did have questions: questions that sent me to inquire and to learn. You brought your problems and joys to me and I shared many of my own with you. We were family.

School administrators have long sought direction in evaluating teachers – you have been involved in many of these attempts. The truth is that teachers are successful to the degree that their students succeed and this takes a long time to evaluate. As I hear from you and know that you are good teachers I taste our mutual success.

Thank you, students, for making me look so good!

Transition

Teaching, Western Carolina University 4 Comments »

Jane and Billy Schulz, featured on the cover of Western Carolina, The Magazine of Western Carolina University

Jane and Billy Schulz, featured on the cover of Western Carolina, The Magazine of Western Carolina University

Dear Followers of my blog,

We have moved this blog from blogspot to our website for easier access and ability to interact. We’re glad to have you join us here!

We do have some exciting news! We are featured in the Western Carolina Magazine, which you can see on the website. The author of the article, Teresa Killian Tate, came to see Billy and me give a presentation at Western Carolina University in April. She was interested in our story and wrote a beautiful article, commenting on our book Grown Man Now and adding other observations. We are very grateful to her and hope you will enjoy her point of view.

One of the most exciting results of the article is the response I am receiving from some of my former students at Western. They bring back memories of my interactions and friendships with them and of their involvements with Billy. I am so grateful for those years, for those dedicated students and their evolving careers.

I hope you will join us in our journey. We cherish your friendship and your interest.

We hope to hear from you here on our blog!

Jane and Billy

PS:
We recommend that you read another of Ms. Tate’s articles in the same magazine. It’s about Special Education at WCU and it features Dr. David Westling of Western—we have enjoyed giving presentations to his classes for many years.

Belated Thanks

Advocate, Education, Special Education, Teaching 4 Comments »

Dear Abby: I am writing to thank the teachers who were kind to me when I was an at-risk child. My mother was mentally ill, my father was absent and the school was my haven. I often wish I could tell some of those adults who helped me along the way that I’m so grateful for the ways they intervened in my life. (June 3, 2010)

Although I never considered myself an at-risk child, with a working mother and an absent father, I was concerned about my family. School was my haven also and I, too, wish I could tell some of my teachers what they meant to me. It’s a safe bet that people old enough to have been my high school teachers are no longer living, so these will be belated thank you letters.

Dear Miss Quinn,

Because our high school was small, I was fortunate to have you as my freshman English teacher, my senior English teacher, and my drama coach. (As you know, this situation was not an advantage when it related to math teachers.)

You really were a dedicated teacher, one who was always prepared to stimulate us to love literature as you did. You also slipped in a life lesson each day as you had a special message on the blackboard every morning. One I remember well was “I complained because I had no shoes until I met a man who had no feet.”

You led me to love poetry as you required us to memorize poems you treasured and ones we found. Many of those poems are still in my mind, food for thought and comfort. Between my freshman and senior years I decided to enter an oratory contest. I chose Paul Lawrence Dunbar’s lovely ode “When Melindy Sings.” One day when we were rehearsing, you came into the auditorium to listen. Although I was not your student that year, you pulled me aside and coached me in the beautiful dialect and cadence. I didn’t win the contest but both of us knew that I should have.

You encouraged – required – us to write. I wrote my first journal in your class, a skill that has enabled me to write articles and books for my professional and personal benefit. I remember one day when I was looking out the window, daydreaming, and suddenly picked up my pencil to write. Rather than chastising me, you asked me to read the poem I had written.

I’d like to take a tree
And shake its bristles dry,
To dip it in the sea
And brush across the sky.

As a drama coach, you were relentless. You gave me the character roles I loved and the self-assurance I needed. I would love to have your thoughts on the things I have written and the words I have spoken since that time. You would be painfully honest and always encouraging. I am grateful to you for teaching me and for helping me to be a good teacher.

With love and respect,

Jane Bolton

Much later, when I returned to college after 20 years and 4 children, I was probably at greater risk but with more determination than ever. My first encounter was with a math teacher who had a major, if negative, effect on me. As indicated above, I did not have a good background in math and learned from my children that the current approach to math was quite different from the rote method used in my early days. As a class, we were experiencing a great deal of difficulty with the new concepts. Our teacher, apparently frustrated with our lack of understanding, stated “I don’t care whether you get this or not!”
That was a useful lesson in what not to do.

Then along came this lovely, quiet-spoken professor from the Department of Elementary Education.
Like Miss Quinn, she was my teacher in my undergraduate and graduate years. I really meant to write to her and learned that she had died. I hope that somehow she will know how important she was to me.

Dear Dr. Newell,

I entered your class with trepidation and left it with confidence. You had been giving demonstrations on TV on the “new math.” You came into the classroom with an overhead projector and a number of simple objects to show us the concepts of commutative and associative, words totally foreign to me. You manipulated the objects, saying, “See how simple it is.” And magically, I did!

At the graduate level, you had us make math teaching materials, particularly applicable to my special education needs. I remember bringing home the wires and colored balls to make an abacus, and my husband saying, “Good. Now that you know your colors, I think it’s great you’re learning to count.”
(Little did we know that my own student who was blind would find this tool so valuable.) Dr. Newell, do you know what happened? I loved math!

Years later, when I was teaching my college class in math methods for exceptional children, one of the comments on my class evaluation stated, “You’ve got to love someone who thinks a place value chart is beautiful.” I owe that to you. That and the fact that you were my stimulus and model for becoming a college teacher. Thank you for leading me to an exciting and fulfilling career.

With love and respect,

Jane Schulz


“Ready for an exciting and fulfilling career.”

I know I shouldn’t end a sentence with a preposition, Miss Quinn, but I ask you reader –
whom would you write a belated thank you note to?


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