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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