Captain Beefheart RIP

Captain Beefheart died recently from "MS complications". For a good introduction/refresher on the Captain do the Floppy Boot Stomp over here..

December 20, 2010 in just news, Music, people | Permalink | Comments (1)

A Life Well Lived

“Death is natural and necessary, but not just. It is a random force of nature; survival is equally accidental. Each loss is an occasion to remember that survival is a gift.”

Harriet McBryde Johnson

Disability and human rights activist Harriet McBryde Johnson died at her home in South Carolina on June 3. The world has lost a passionate and dedicated advocate for social change. Untold numbers in the disability community and beyond have lost a caring friend and role model. Johnson was a civil rights lawyer, a weaver of tales, and a spokesperson for the dignity and humanity of people with disabilities. Her articles and essays for the New York Times, including a Sunday magazine cover piece, thrust Harriet onto the national stage. She wrote passionately and with humor about a quite serious topic: her right and the rights of others, to exist in the world as a person with a disability. Her withering critique of those who would deny her existence was delivered with a calm and open-hearted voice, and her generosity of spirit was evident always.

Article here.

Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to "the charity mentality" and "pity-based tactics" of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, "I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person."

Article here.

Picture here.

Articles by Harriet McBryde Johnson

Unspeakable Conversations

He insists he doesn't want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.

Whenever I try to wrap my head around his tight string of syllogisms, my brain gets so fried it's . . . almost fun. Mercy! It's like ''Alice in Wonderland.''

It is a chilly Monday in late March, just less than a year ago. I am at Princeton University. My host is Prof. Peter Singer, often called -- and not just by his book publicist -- the most influential philosopher of our time. He is the man who wants me dead. No, that's not at all fair. He wants to legalize the killing of certain babies who might come to be like me if allowed to live. He also says he believes that it should be lawful under some circumstances to kill, at any age, individuals with cognitive impairments so severe that he doesn't consider them ''persons.'' What does it take to be a person? Awareness of your own existence in time. The capacity to harbor preferences as to the future, including the preference for continuing to live.

At this stage of my life, he says, I am a person. However, as an infant, I wasn't. I, like all humans, was born without self-awareness. And eventually, assuming my brain finally gets so fried that I fall into that wonderland where self and other and present and past and future blur into one boundless, formless all or nothing, then I'll lose my personhood and therefore my right to life. Then, he says, my family and doctors might put me out of my misery, or out of my bliss or oblivion, and no one count it murder.

Not Dead at All - Why Congress was right to stick up for Terri Sciavo

13 Questions from Ouch! May 15, 2008

There are worse things in the world than looking foolish. Someone told me that right before law school and it has stood me in very good stead. If you can risk looking foolish, you can do what you want to do.
Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon

The Disability Gulag

Grandmother lost her mother in the early 1900's to what was considered progressive policy. To protect society from the insane, feebleminded and physically defective, states invested enormous public capital in institutions, often scattered in remote areas. Into this state-created disability gulag people disappeared, one by one.

Today, more than 1.7 million mothers and fathers, daughters and sons, are lost in America's disability gulag. Today's gulag characterizes isolation and control as care and protection, and the disappearances are often called voluntary placements. However, you don't vanish because that's what you want or need. You vanish because that's what the state offers. You make your choice from an array of one.

But now the gulag faces a challenge from people who know the fear firsthand.

The Way We Live Now: 5-30-04; Stairway to Justice

Wheelchair Unbound

Alas for Tiny Tim, He Became a Christmas Cliche

Overlooked in the Shadows

New Mobility Magazine Person of the Year 2003: A Life Well Lived

Books by Harriet McBryde Johnson

Too Late to Die Young: Nearly True Tales from a Life

Review here.

And here.

Accidents of Nature

Others here.

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June 5, 2008 in advocacy, people | Permalink | Comments (0)

Judge Judy

I don't watch Judge Judy, in fact I don't even watch television but on her February 14 episode the following exchange apparently occurred:

Judge Judy said "What is your disability?"

Girl "I have MS, multiple sclerosis"

the judge replies "YOU LOOK FINE TO ME"!

Hope she isn't the Judge on this guys case.
Judge Judy lives on the web here.  Send her "Honor" a message here.

Anyone capture it on youtube?

February 29, 2008 in people | Permalink | Comments (0)

Of late, death has seized too many of Alaska's remaining giants

The unique nature of Alaska comes not from the beauty of it's land but from the independant nature of it's people. Traveling in Botswana, Africa I met a British couple that had spent two weeks in Alaska and met one 'local'. That's like visiting an art musum with your eyes closed.

I meet Herbie in 1980 after one of his legendary Iditarod sprints. Susan's daughter is in dance with my daughter, we worked stage crew on the Nutcracker just two Decembers ago. Most Alaskan's could probably tell you a story or two about these folks, they will be greatly missed.

"Statistics don't exist for this kind of thing, but Alaska must lead the nation when it comes to living legends. The state is young enough that some of its first leaders and explorers are still around. Its vastness and mystique act like a magnet for the kind of people who become legends. Its remoteness and hostile climate inspire the resourcefulness and resiliency that produce legends.

We walk with giants because they walk with us."

Read more here. (registration required)

December 8, 2006 in alaska, people, the north, we don't care how they do it outside! | Permalink | Comments (0)

Representative not giving up seat because of multiple sclerosis

State Rep. Dan Stevenson, a Democrat from Highland, said he was recently diagnosed with multiple sclerosis, but doesn't plan to retire from the Indiana House of Representatives.

Stevenson, who is unopposed in the November election, said he expects to keep up with the busy pace of the 2007 legislative session by using treatments for the disease, which affects the central nervous system.

More here.

September 25, 2006 in people | Permalink | Comments (0)

No Fear, no frills

Liz Carr
Liz Carr: "Many people use the 'right' language, but still see me as a cripple." Photograph: Graham Turner
"There is an awkward silence as the 400-strong audience at the Komedia comedy club in Brighton watch Liz Carr make her way up a ramp at the side ofthe stage. Carr, the last of 12 stand-up comedians to take the stage,knows her entrance in a wheelchair is the cause of the tension, but she soon brings the house down with a cocktail of caustic observational gags about disability and sexuality."

Chuckle here.
Hear here.


July 14, 2006 in humor, people | Permalink | Comments (0)

Mountain climber takes on challenge of multiple sclerosis

Maggie Schneider wasn't sleeping well. Her head ached; her stomach rumbled. She was more than halfway into a 39-mile trek up Mt. Everest with a leg left numb by multiple sclerosis.

At 11,000 feet, she decided to put off taking the injection that would help her.

"I will postpone my shot until we get to another rest day in three days. That is only two days late, so that will work," she wrote in an e-mail to her husband, Paul, from Namche Bazaar, a regional trading center almost halfway up the mountain.

She gets flu-like symptoms for 24 hours after the shots and wanted to delay that until she could rest, she said, shrugging off the choice during an interview at her office at the University of Pittsburgh, where she is an adviser.

I'm always adjusting my "Avonex" days. The day after is always so unpredictable.

Climb higher here.

April 13, 2006 in people | Permalink

Pathbreaking Comedian Richard Pryor Dies

Richard Pryor, the groundbreaking comedian whose profanely personal insights into race relations and modern life made him one of Hollywood's biggest stars, died of a heart attack Saturday. He was 65.

Pryor died shortly before 8 a.m. after being taken to a hospital from his home in the San Fernando Valley, said his business manager, Karen Finch. He had been ill for years with multiple sclerosis, a degenerative disease of the nervous system.

More here.

Pictures here.

MTV coverage here.

Richard's website declares "I Ain't Dead Yet, M!$% F%$#!" (for adults)

December 10, 2005 in entertainment, people | Permalink | Comments (0)

Butcher says she will conquer leukemia

With the single-minded focus she once applied to winning 1,100-mile sled dog races, four-time Iditarod champion Susan Butcher has launched a seven-month campaign to beat her leukemia and an associated blood disease.

"My whole life has been about challenges -- I love challenges," she said Friday.

More here.

December 10, 2005 in alaska, people | Permalink | Comments (0)

NPR : Teri Garr's Story: 'Speedbumps' and Progress

Teri Garr on Fresh Air

Actress Teri Garr is probably best known for her role in Mel Brooks' Young Frankenstein. She has also worked with other many other well-known directors in her varied career. Her first role was in Francis Ford Coppola's The Conversation. She was in Stephen Spielberg's Close Encounters of the Third Kind, and Sydney Pollack's Tootsie.

Before becoming an actress, Garr was a dancer, following in the footsteps of her mother, who was a Rockette. Garr danced in a number of Elvis Presley films, on the Sony and Cher Comedy Hour TV show, and on the show Shivaree.

In 2002, Garr was diagnosed with Multiple Sclerosis -- a ruling that made sense of the symptoms that had plagued her for 20 years. Her new memoir is Speedbumps: Flooring It through Hollywood. The book was written with Henriette Mantel.

Streaming version of interview and book excerpt here.

December 6, 2005 in people | Permalink | Comments (0)