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.

What’s the Word?

Advocate, Community Participation, Courage, Disability, Education, Inclusion, Inspiration, Movie Reviews, People with Disabilities, Special Education No Comments »

There is a new film released entitled “My Idiot Brother.” Following the current, intense battle against the use of the word “retarded,” I wonder if the use of this pejorative term will attract the same attention as the R word. Is idiot different from retarded?

When I first began my studies in special education, I learned the terms historically used to identify persons who had intellectual disabilities. The terms used were imbecile, idiot, and moron. After years of usage, these words became offensive and were changed to severely retarded, moderately retarded, and mildly retarded. Initially they were useful in identifying levels of disability and in planning educational programs. They also became used as hurtful words, slung at people in anger or rejection, such as “You idiot!”

See the connection? Whatever the term, as long as we remain insensitive to people who are vulnerable, those who have disabilities, and those who are unable to fight back, we will use terms in inappropriate and unkind ways.

Rather than fighting the word, let us fight the deeper problem – attitude. I think the answer is another R word: respect. In our family, we have words that we do not use. In addition to the words referred to above, we add “stupid” and “dumb.”

Billy asks me why we don’t use those words. I reply, “Because those words make people feel bad.” If we can teach that idea, we won’t have to stage battles to obliterate each objectionable word that comes along. And they will come along if we continue to believe that the word is the problem.

I, for one, will not see “My Idiot Brother.”

“I can’t read the words.”

Adults with Down Syndrome, Courage, Education, Frustration, Mother of an Adult with a Disability, Reading 6 Comments »

If you follow our blogs, you know that my son Billy has overcome a number of  hurdles and has succeeded in many areas of his life. He graduated from high school, has been successful in several jobs,  is considered a valuable member of our community, and is certainly a cherished and important part of our family and circle of  friends.  He is a competent and happy man. However, there are times that  Billy expresses dissatisfaction with his disabilities in certain areas. He cited one of these areas this morning. As we were leaving church, he said to me, “I can’t read the words.”

Reading a magazine.

Reading a magazine.

After we got into the car, I asked him to tell me about this problem. For years we have marveled at the way he follows the hymns half a beat behind, presenting the effect of singing with the congregation. He is so talented in doing this that it appears he is following with the congregation. One Christmas a friend, who holds a position in our church, asked me if I thought Billy would be willing to read a piece in a program. I told her that he reads very little and she was totally surprised.

We have worked on reading for most of Billy’s life, in school and at home. He brings in the paper each morning and reads the weather report and some of the headlines. He reads his TV guide and parts of People magazine, where he is prompted by illustrations and familiar terms. The hymnal, however, is not illustrated and has few words relevant to Billy’s life. He jumps in when phrases are repeated in the chorus, as in the

hymn Till We Meet Again, which we sang this morning. I did not realize how frustrated he was with the other parts that he could not read.

We talked about this again after we got home and Billy said, ” I am so dumb.” I always tell him that he is smart in so many ways and that “dumb” is a hurtful word and one to be avoided. It breaks my heart to hear him say that about himself.

Although there are over 900 songs in the Methodist Hymnal, we will find a way to work on reading them. Perhaps we can isolate words that are most frequently used and establish a hymn sight word list. It will be a challenge for both of us.

Once again I am amazed at Billy’s courage. He loves to go to church. He frequently nods during the sermon and I realize he doesn’t comprehend the message. If I poke him he tells me, “The Bible says don’t poke in church,” and we both giggle. This is another measure of his courage. Even when he doesn’t understand, he hangs in and gives it his all.

There must be a better term than “dumb.”

Difficult Decisions

Courage, Disability, Down Syndrome, Family Challenges, Inspiration, Parents 2 Comments »

Although prenatal testing is widely used, it is not perfect. I have a friend who told me of her daughter’s unnerving experience:

The day started out as any other. She was 16 weeks pregnant with her second child. It was time for the monthly visit to the obstetrician. She was told there would be a routine test given called an alpha fetoprotein test. This could determine any abnormalities like spina bifida , anencephaly, Down syndrome, or other chromosomal problems. The test was given and she left the office to run other errands. A few days later, she was called and asked to come in with her husband to talk with the doctor. When they got there, he said it was the worst test he had ever seen since he had been practicing. He then explained to them all of the abnormalities that this child could be born with. He was very discouraging and told them that they could choose to have a “therapeutic reduction” rather than take a chance on a severely “handicapped” child. Without hesitation, they both said they would not consider that as an option. ” Therapeutic reduction” is the politically correct term for abortion. Their belief that this was a child would not allow that. So for the rest of the pregnancy much praying, reading, studying, and preparing was done. At the delivery there was on hand a neonatal specialist to evaluate and observe the abnormalities. A beautiful, healthy, perfectly formed little girl was born. She is now a lovely 14 year old young lady who is the joy of her family, her friends, her school, her church, and her community. What if she had been “reduced” ?

Other pregnant women whose test results are normal may give birth to a baby with Down syndrome. There are a number of blogs relating such experiences when the birth is a total surprise.An excerpt from a recent blog indicates the difficulty in accepting this revelation:

I knew the minute I saw her that she had Down Syndrome and nobody else did. I held her and cried. Cried and panned the room to meet eyes with anyone that would tell me she didn’t have it. I held her and looked at her like she wasn’t my baby and tried to take it in. And all I can remember of these moments is her face. I will never forget my daughter in my arms, opening her eyes over and over…she locked eyes with mine and stared…bore holes into my soul.

However, an investigation by the Associated Press concludes that some inherited diseases and chromosome aberrations are declining and others have nearly disappeared, a trend that is credited to the increased use of genetic testing either before or after conception. A growing number of people are getting tested for genetic mutations before they try to get pregnant, while increasing numbers are screening embryos and fetuses and continuing only with those that get a clean bill of health.

One biology professor at a noted state university views the termination of a pregnancy of a child with Down syndrome as a moral imperative. Many physicians and counselors are not well informed about Down syndrome and fail to present the positive views that many parents experience.

There is a contradiction in our society’s increasingly friendly attitude toward people with disabilities and its obsession with developing more revealing genetic tests. If we are so willing to screen aggressively to find these disabilities and then potentially abort the fetuses, what does that say about the value of the lives of those people living with the disabilities?

Abortion is a private, personal choice. Perhaps the dilemma could be softened if people were advised about other options, if they were given more information on which to base decisions. In our next segment we will investigate alternatives to “therapeutic reduction.”

It’s easy to tell when Billy has been looking at family photos.
He will always ask, “You member I played that toilet paper?”
We can’t imagine life without Billy’s presence.

What do you think about this issue? Can you suggest options?
Have you had to make difficult decisions?

grownmannow.com

A Special Message

Courage, Family Challenges 15 Comments »

This blog was written by my daughter, Billy’s sister, Mary de Wit.

Words are venerated in my family. We attempt to use them with precision, whether writing or brainstorming or popping puns like shuttlecocks across the table at each other. They are electrically charged and elicit visceral responses, and we are sensitive to alternative word uses.

This summer, I watched five boys play baseball. Their voices were isolated and magnified by a leggy hedge and the gloaming. “Hit the ball, ree-tard!” yelled one of them. I cringed. We never said retarded in a pejorative sense at our house, where the word indicated a badge of courage, a moniker of challenge. “Retard” was the local pronunciation for no longer working your job of twenty-five years. And retarded was carefully used as a synonym for slow. Progress may be retarded, but still made.

The word “special” holds high voltage with us. If you were called special around our table, you may have had Down syndrome, or you may have received all A’s on your report card. You may have made it through a rigorous Freshman semester at the Citadel, or conducted an oxygen exchange experiment with frogs. You may have sold a million dollars’ worth of insurance in a month. Or maybe you raised four children, taught Kindergarten and commuted to a university to earn a degree. All of those things were considered special.

Our family was bound together with low-tack adhesive like masking tape. Occasionally realigned, changes left historical records in batik-like patterns after the paints spattered with each move, each project, each endeavor. It takes time. The process is sometimes retarded by circumstance. The outcome is special: a work of art.

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