Posted on 06/05/2005 11:45:26 AM PDT by 8mmMauser
"Too Late To Die Young: Nearly True Tales From a Life," by Harriet McBryde Johnson.
About two years ago, Harriet Johnson appeared on the cover of The New York Times Magazine. If you saw her portrait, you probably haven't forgotten it.
A thin woman in a wheelchair leans forward, a purple shawl draping one shoulder. Johnson describes it this way in her new memoir: "The portrait has been described as beautifully disturbing, and most nondisabled people seem to see it that way. I'd prefer to call it disturbingly beautiful, but I'll take it the other way around if I must."
Johnson has an unnamed muscle-wasting disease, but don't dare say she "suffers" from it. She insists on being her own complicated person, a Southern lady, for instance, as well as a socialist, an atheist, a lawyer and a born storyteller with a wicked sense of humor.
She eschews pity and sentimentality. She supports the work of Not Dead Yet, a group of anti-euthanasia activists who demonstrated outside Terri Schiavo's Pinellas Park hospice earlier this year, dramatically sliding out of their wheelchairs and lying on the ground.
And though Johnson hates the hackneyed trope of triumph in the face of disability, she nevertheless has a string of interesting adventures. She runs for elected office. She travels to Cuba to discuss disability rights. She protests the Jerry Lewis telethon annually in her hometown of Charleston, S.C., and she bribes her friends to join her with promises of free food.
Her gripe with the telethon is its grim prognostications. When she was 30, her mother became ill, and Johnson had to accept for the first time that, contrary to all expectations, she might indeed outlive her parents. "While anyone may die young, it's not something you can count on," she writes. "You have to be prepared to survive." It's that angry, proud but utterly normal brand of survival that is at the heart of Johnson's memoir.
The most fascinating chapter is her encounter with the philosopher and animal rights activist Peter Singer. (It was this encounter that rated The New York Times Magazine cover.) Singer believes that in some cases it is morally acceptable for parents to kill severely disabled infants. Johnson disagrees, so much so that she fears even debating him would dignify his ideas as socially acceptable. Nevertheless, she meets him, travels to Princeton University to debate him and ends up with a great story about it.
The best memoirs don't necessarily tell every event in a person's life, but they do capture the voice and the emotional feel of the author. Yes, it's impossible for a nondisabled person to fully know what Johnson's life is like. But her writing is so vibrant, so interesting and so funny that you can't help but feel as if you're in her world, sitting beside her and hearing her story for yourself.
On the contrary, Jerry Lewis and his telethons are the epitome of hope for cures for neuromuscular diseases.
But, around here, the disabled who attack Jerry Lewis get lots of attention.
Thanks for bringing that up.
I don't follow Jerry Lewis much except when we lived in France all our neighbors loved his unfunny continence. They would ask me and be surprised I didn't care for the guy.
Others don't care for him either as evidenced here:
http://www.independentliving.org/docs4/hershey93.html
I understand what Laura Hershey means. Many of the handicapped I met at Pinellas Park were not expecting some promised cures, were more interested in getting on with their lives.
Ping
If the adults don't want the help, fine. He's got plenty of children on his radar who might benefit.
Neither Jerry Lewis nor his types ever offered us an iota of help in the 26 years of our "need", except we never asked for such help, never expected any amazing cures, were too busy living our lives.
We who are or were in those situations appreciate how to look at life through the practical and the what-is, not what may be.
Jerry Lewis might be a wonderful person and be doing wonderful things. The French we know love him.
The people in this article I saw in action, even had to step over one or two, and they were pretty darn decent. I also saw a lot of handicapped kids there, and the attitudes were pretty much the same regardless. No bone to pick with Jerry Lewis, just not interested.
She's got a good attitude, despite being a socialist.
Ping to June
I was kind of surprised when these folks appeared on the scene. They were so diametrically opposed in many ways to my own thinking, I could hardly believe we could get along. But we did.
Sorry if I duplicated some pings....
8mm
You don't get it? Terri has passed away(brutally murdered), but there are others out there facing the same treatment. Would you like to leave this earth by starving and dehydrating to death? I know I don't.
I got along with them better than some of my "conservative" and Catholic brethren. Wow, what am I saying??
Thanks for posting.
Thanks for the ping!
Thank you for the pic, Phil!
I work with the Disabled and the first thing I check for is the smile.
If it isn't there I consider putting it back on job one.
When will the world come to realize so many of these people love life just as they are?
A point that may be of interest to some is that I find a lot of those I have worked with are very angry with God for their condition.
I remind them that God don't make no junk and there is a purpose for them.
I commend McBryde for writing her book.
When are you going to figure out, it's simply not over and done with?
This snip is pretty amazing form this website...
http://www.discardedlies.com/entries/2005/03/the_cruelest_hoax_signing_your_own_death_warrant.php
I wonder how reliable the info is.
EUTHANASIA
"The idea was launched in the U.S.A. in 1969 by a law journal article entitled "Due Process of Euthanasia: the Living Will, a Proposal." (In Britain the Voluntary Euthanasia Society is the main distributor of Wills/Directives). The proposal soon found favour with U.S. government officials as an economy measure. The leaked "Derzon memorandum" advised President Carter to "Change social values regarding cost-inducing activities" and stated "The cost-saving from a nation-wide push toward 'Living Wills' is likely to be enormous. Over one-fifth of Medicare expenditures are for persons in their last year of life." But it was not until 1991 that it was made compulsory for all patients admitted to hospital in the U.S., for whatever reason, to be presented with "Living Will" forms."
So what are we trying to say here..that now we want to push the envelope and include not only those who are in the last years of life in those cost savings measures but also those that might require long term Medicare like the borderline disabled (PVS, Alzheimer's, CP patients, the minimally conscious, etc.)?
I didn't work out the details, but something like that.
Martyrs live forever. The people who murdered her so cruelly, and the people who cheered, will always be remembered as the loathsome grubs they are.
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