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Journeying...By Grace Alone
Sunday, December 11, 2005
Free speech...article from St. Louis Post
I belong to a list serve for parents of children with Angelman's Syndrome, what my Joshua has. One of our parents, while searching for blogs written by fellow parents of children with AS, instead found a blog written by a female student who attends Wash U in St. Louis on a full writing scholorship. The mother was outraged and hurt by what this young woman wrote, it was truly hateful and disturbed, she then sent a link to the blog through the list serve and, needless to say, parents who read it were flabbergasted by what this young woman had to say about our children. Below is an article that was written for the St. Louis post, the author does a wonderful job, I think, better than I could, of telling exactly what happened from there.
Here is the article:
Free speech protects even words we don't like
By Bill McClellan
ST. LOUIS POST-DISPATCH
12/11/2005
Bill McClellan
Matthew was born with Angelman syndrome. He was mentally retarded. He was prone to seizures. As is typical of children with the genetic disorder, his movements were jerky and marionette-like. When he was 12 years old, he got up in the middle of the night and went into the living room. He opened a footrest on a reclining chair and put his head in. His jerky movements apparently caused the footrest to clamp down on his neck. Efforts to extricate himself only made matters worse. He suffocated.
Are you having fun yet?
Me neither. But let me continue.
Matthew's sister wrote an account of her brother's death for a Web site created for the siblings of children with Angelman syndrome. The Web site was set up so these siblings could talk with other kids who are confronting the same problems. It is not easy to live with a disabled sibling. And so Matthew's sister posted her note. She said her brother was still an important part of her life.
A student from Washington University came upon the Web site. She linked the site to her personal blog and she wrote: "Welcome, gentle readers, to a special installment, designed to raise awareness of Angelman's syndrome - the world's most hilarious form of mental retardation." She put in a warning: "Stop here if you can't stand retard jokes."
She defined the fate of children born with the syndrome: "In essence, they become the ultimate spaz." Maybe her grammar wasn't so good, and I'm patching up some of her spelling, but you get the spirit of the thing. She quoted Matthew's sister's entry, and wrote: "It really breaks my heart to hear of little Matthew's accidental, self-inflicted, and cartoonish death. I'm very sorry . . . but not so sorry that the thought of a retard strangling himself with a Lay-Z-Boy doesn't make me break into hysterical laughter. But seriously folks, our society needs to get to know Angelman syndrome. We need to grow closer as a community and love our 'tards."
Perhaps because she had linked the Web site to her blog, parents of children with Angelman syndrome read her postings. Many were furious. They posted angry notes on her blog. Some threatened to complain to Washington University. The student mocked and taunted the parents.
"Believe it or not, gentle readers, my blog was on my college application. For my writing scholarships, at least. Apparently some members of academia find my (expletive deleted) amusing. Who'da thunk it." She taunted another parent, a mother, and said that she bet the mother, when pregnant, had dreamed of a child with whom she could talk about books, a child who would someday go to college, who would someday get married.
The rhetoric got more heated. The student's mother contributed a posting. "People - puh-leeze! You visit a blog to read the personal ramblings of a college student who may or may not express a politically correct viewoint on a subject in which you have an emotional investment and you feel you can dictate both the tone and the content of said essays. You may not. Oh wait! I get it! You have to assault my daughter with your gramatically challenged rants because you will never be able to direct your frustration where it really belongs: your 'little angel.' Let's take a survey: Despite growing pressure in this country to never say or write anything which has the teeth to offend so much as a blade of grass, how many readers think Death by Barcalounger is hilarious? I do, so blame me for my daughter's ability to twist tragedy into sarcastic irony." That posting explained a lot.
Because the student has boasted about her scholarships at Washington University, many parents complained to the university. Those complaints landed on the desk of James E. McLeod, dean of the College of Arts and Sciences. I visited him Friday.
He said he had heard from many parents. I could use many words to describe their messages, he said. Most were angry. Most were hurt. Some were outraged. Some understood the difficulty of responding to personal views on a personal blog, he said. He wrote a letter of apology to the parents on behalf of the university for the "insensitivity of our student."
McLeod said he could not discuss any conversations he might have had with the student - and I have decided not to use her name because she calls herself, on her blog, "an attention *****," and would clearly relish more notoriety - but he did say that it would be fair to say that free speech is the guiding principle in this case.
"To punish a person for their words would be a serious breach in our understanding of this principle," he said. "The principle is awfully precious."
It is a principle that only comes to the fore when the speech is unpopular. Still, it would be much easier to defend free speech if the speech involved some unpopular political viewpoint. But making fun of severely retarded children? Making light of a such a child's death?
"It's painful," McLeod said.
Words can hurt, cut so deeply, or they can be healing, as a salve on a wound. I have been thinking about it very much lately, only because I have mainly been thinking how far an encouraging word goes. Proverbs 25:11 tells us: " A word fitly spoken is like apples of gold In settings of silver." Beautiful imagery!
I am reading the Dickens book Oliver Twist presently, and if you don't know the story, Oliver has a very hard start in life. He has no family, lives in a workhouse for orphans where he is extremly mistreated, to say the least, and is then sold to be the apprentice to an undertaker. While living with the undertaker he suffers verbal abuse everyday by the undertakers wife and other apprentice, they daily tell him how worthless he is. Oliver decides to run away, I cheered at this, and while passing the workhouse he used to live, he sees a young boy, one of his only friends in life. Oliver tells the young child he is running away and his young friends tells Oliver that he has heard the doctor say that he is dying, the the following conversation takes place:
"I heard the doctor tell them I was dying," replied the child with a faint smile. I am very glad to see you, dear; but don't stop, don't stop!"
"Yes, yes, I will, to say good-b'ye to you," replied Oliver. "I shall see you again, Dick. I know I shall! You will be well and happy!"
"I hope so," replied the child. "After I am dead, but not before. I know the doctor must be right, Oliver, because I dream so much of Heaven, and Angels, and kind faces that I never see when I am awake. Kiss me," said the child, climbing up the low gate, and flinging his little arms round Oliver's neck. "Good-b'ye, dear! God bless you!"
The blessing was from a young child's lips, but it was the first that Oliver had ever heard invoked upon his head; and through the struggles and sufferings, and troubles and changes, of his after life, he never once forgot it.
Proverbs 25:11
A word fitly spoken is like apples of gold In settings of silver.
Love one another~Adrienne |
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