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Stem Cell Research may lead to treatment of muscular dystrophy & epilepsy

June 5th, 2008 by Scott Marks

Gene Pool

I know Emulsion Compulsion is a movie site, but it’s Jerry-related so bear with me.

You don’t have to study the heavens tonight to know that the stars are in their courses.

Timpani…

On the same day disability and civil rights attorney Harriet McBryde Johnson died, scientists at London’s Newcastle University announced the creation of a stem cell technique designed to offer a treatment for a series of genetic conditions, including some forms of muscular dystrophy and epilepsy.

OH, YEAH!!!

Earlier this year a team that’s a hell of a lot smarter that you and me created the first IVF embryos to contain DNA from one man and two women. The technique can create a child “with three parents” and could prevent a host of deadly hereditary diseases. Scientists believe that this can all be achieved within three years.

Is this the same stem cell research that Jackanape in Chief George Bush wants outlawed?

I credit 1968 as the first year that I began watching the Telethon with regularity. This year marks the 40th year that I don’t leave my house on labor day. From 1972 to up until around ten years ago when Jerry started taking nap breaks, I logged as many hours per year as humanly possible. The advent of VCR’s made it much easier to enjoy all twenty-one-and-a-half hours of the annual love-in.

In spite of it’s annual one-day shelf life, the Telethon means almost as much to me as the movies do. The man behind it is the first (presumably) non-animated artist ever to punch my memory card. As early as five-years old Lewis was on my radar and I hunted down each one of his new releases. His pictures splattered all over the movie section made it easier on a kid just learning to read.

The Chicago American TV Guide was my first Bible and every Saturday night I scoured its pages for Jerry Who Else’s? name. Even though I had no conception of what a telethon is, Jerry’s name was above the title so count me in. The first syndicated Telethon was broadcast Labor Day weekend, 1966. At a family get-together, my cousins watched some noxious sporting event while I stole away to the back bedroom to see my first glimpses of Jerry the humanitarian. Two years later I had one of the older kids on the block buy me a pack of No-Doz to help me make it through the night. I was hooked!

As much as I would like to tell you more about today’s scientific breakthrough, who am I kidding. I could barely make my way through this story let alone the latest issue of New Scientist magazine.

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Filed Under Rants

Dig A Hole: Harriet McBryde Johnson, staunch Jerry Lewis Telethon protestor

June 5th, 2008 by Scott Marks

Harriet McBryde Johnson was eight years old she learned from watching the annual Jerry Lewis Labor Day Telethon that muscular dystrophy is a “killer disease.”

“Unless a cure is found,” Lewis said in one of his pitches, “These kids won’t be alive in ten years.”

In her 2005 memoir, Too Late to Die Young, the dystrophic Ms. Johnson recalled that as a result of the Telethon’s message, she began living her life in “tiny increments,” marking time with thoughts such as, “When I die, I might as well die a kindergartener.”

I believed I didn’t have long to live,” Johnson said in 2001. “That’s scary news for anyone, and especially for a child. Now I’m 43 years old and they’re still telling the same distorted story. They still imply that our only chance of happiness is a cure. These stereotypes get in our way when we try to live our lives.”

The feisty, well-known Charleston, South Carolina disability and civil rights attorney, died suddenly Wednesday. She was 50.

Johnson’s father, Dr. David D. Johnson, said he spoke with his daughter by phone at about 10:30 p.m. Tuesday. “I’m a little stunned right now. I don’t know what happened. I’m just in mourning,” he said.

Johnson died in her sleep, he said. A private memorial service will be held in about six months. There will be no funeral, he said.

She was born July 8, 1957, in eastern North Carolina and had been a Charleston resident since age 10. Johnson described herself as a disabled, liberal, atheistic Democrat. “I’m really amazed at what I can get away with. Charleston is very tolerant of what it sees as eccentricity,” she said.

According to The University of Notre Dame, ” She attended self-contained special-education classes until age 13, when she was invited to leave because she was campaigning to get the teacher fired. At that time, there was no right to appeal; she would have been limited to home-bound instruction had her parents not convinced a private high school to give her a try. She has a B.S. in history from Charleston Southern University (1978), a Master’s in Public Administration from the College of Charleston (1981), and the J.D. from the University of South Carolina (1985). For over 13 years, she has practiced law in Charleston, the past 10 years in solo practice. Before becoming a lawyer, she worked as a freelance technical writer/editor, a college sociology instructor, and a community organizer. She is active in a variety of political and disability organizations and currently chairs the Democratic Party for the City of Charleston.”

Johnson drew national attention for her opposition to “the charity mentality” and “pity-based tactics” of the annual Lewis muscular dystrophy telethon. She protested the telethon for nearly 20 years. Johnson spent every Labor Day (and a good many waking moments of her life) rallying opposition to the telethon.

What troubled her most were what she perceived as the Telethon’s stereotypical images of people with muscle diseases and other disabilities. Indeed, many of the images on the Telethon are there to make you cringe just long enough to reach for the phone and call in a pledge to help put an end to the disease.

In a May 20, 2001 CBS interview, the Chairman of the Muscular Dystrophy Association of America, Jerry Lewis was asked about those who consider him “patronizing.” Lewis told correspondent Martha Teichner, “I’m telling about a child in trouble. If it’s pity, we’ll get some money. You don’t want to be pitied for being a cripple in a wheelchair? Stay in your house.”

Since that day, Johnson made it her calling to tell countless MDA patients to be proud that you didn’t let Jerry keep you “in your house.”

“I was distressed that Teichner, whose work I respect, glossed over the bigotry in Lewis’ comments,” Johnson said. “To glide into the stats on how much money he has raised, as though that justifies it. If an interview elicited a comment like that about African Americans or women, I can’t imagine CBS Sunday Morning or Teichner handling it that way.”

Part of me understands Johnson’s disdain over this “better dead than disabled” approach. One of the first Extra Special Specials I remember watching featured a shocking moment where Jerry held up a child in leg braces, stared directly into the camera and said, “This is God’s mistake. We’re here to help correct that mistake.” Words of wisdom from the King, make that the Lord of Comedy.

Johnson frequently called for the ouster of Lewis as the Telethon’s host. “He’s called people in wheelchairs ‘half persons’ and ‘mistakes who came out wrong,’ she noted, “and says one outrageous thing after another and won’t apologize. This is bigotry.”

Throwing bigotry into the mix is unwarranted. Bigotry is intolerance fueled by hatred and while Jerry can sometimes come off as overzealous, his methodology is not born out of contempt. That is unless you count the personal disgust Lewis harbors against the insidious disease. (I’m beginning to sound like Julie LaRosa: “It’s not why he does it, it’s that he does it!“) Besides, he’s one of the few old school survivors left on the planet. The man is not going to change. Three nights ago he performed live at an Indian casino where by all accounts, Jer was still doing “fag” and “Polack” jokes.

As for “(gliding) into the stats” on how much money the Telethon has raised over the years, $2 billion is a pretty big number to hide behind. When all is said and done, thousands of lives were cared for and made more comfortable through the monies raised by the MDA Telethon.

No matter, every Labor Day morning for over a decade found Johnson and a small group of friends picketing and distributing handbills. “I’m astonished that this has turned into a ten year fight,” Johnson says. “The first year, it was just my Dad and me out there for the first hour. Our numbers doubled — to four — later in the day. In recent years, around a dozen wonderful friends have given part of their holiday for this effort.”

Johnson’s father, Dr David D Johnson, has been attending the protest since its beginning. A retired Citadel professor, he now volunteers weekdays at the Charleston Branch, NAACP. “I like to tell people I’m Harriet’s bodyguard,” he says. “But in fact most people are friendly.”

Roxan Triolo Olivas, assistant director of public information for the Muscular Dystrophy Association, issued the following statement: “Jerry Lewis and the Muscular Dystrophy Association are sorry to hear about the passing of Ms. Johnson, an accomplished woman and an advocate for the disabled community. We offer her family our sincere condolences.”

In addition to her father, survivors include her mother, Ada A. Johnson, and her siblings, Elizabeth Ross Johnson, David McBryde Johnson, Eric Austin Johnson and Ross L. Johnson.

Links:
Telethon Photos
Jerry Lewis Photos

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Filed Under Obituaries

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