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.
I'm a Texan, and although you didn't ask me, I am disturbed that Governor Bush signed into law that hospitals can refuse care against the wishes of the patient and the patients family. Several disabled but not dying people have been murdered because of this law.
I keep promising to write the more personal side, the religious side, but just have not done it yet. I share that feeling of guilt that I could have done a whole lot more. Tons of phone calls, zillions of posts, ideas never pursued. It was a helpless feeling.
Sometimes I would stand for what seemed like hours, just staring at the hospice, doing nothing and furious with myself for not doing something.
But we did do something for which we don't give ourselves enough credit. We did stand up for Terri wherever we were and did what we meant to be the right thing. We still are. We prayed and we still can pray.
We are wiser by this event, and we see a danger not so visible before. Armed with that knowledge we can better confront the danger.
I am disturbed too. Don't understand the reasoning behind this - unless there were many demands for care that were futile and prolonged the suffering of the patient.
I hope that it is reason and not to do otherwise.
I would like to see a good discussion on the Texas laws.
Morphine. Morphine eases suffering. Death could send someone to eternal suffering. Mercy killing is a very temporal viewpoint I think.
Who decides what care is futile? People in comas recover, sometimes years and years later.
Furthermore, I don't think that the hospital and these slimy 'bioethicists' care more about easing suffering and love the patients more than family and friends. It's merely economic to them- strike that- it's both economic and sometimes a personal agenda to extend euthanasia. MOst bioethicists are pro-euthanasia.
Don't forget Felos and Bushnell.
Morphine can be such an euphamism supporter for "happy death". It was "instructive" for us to witness an old lady, our dear friend, in France damaged by alcohol abuse. Indigent, she was brought to a hospital and our devout M.D. friend went with us to visit her. She was on morphine drip and the staff explained it helped ease her pain.
That is for sure!
Our M.D. friend looked at the drip and showed us how they had the faucet open to a fatal drip. She was still conscious and we baptized her on her wish then and there. We went out to get a bite to eat and she was "in the fridge" when we got back. Just in time!
Nobody to yell at, no target for our outrage, that is how it was.
I will never forget what they did to Terri.
"Starving and dehydration is evil"
Barbaric and uncivilized too!
I can only think of those twins as Felos de se and Dethnell 8mm
Oops, forgot my paragraph break. Dethnell and 8mm do not go together.
Howdy!Sorry I'm so slow getting back to you. I've been busy with eBay stuff lately.
I'm not familiar with such issues as that and can't think offhand of any Texas Legal type Freepers.
If I do, I'll ping them to you here.
All of this talk about euthanasia actually makes me sick.
How dumb do people have to be to be willing to place their family in the hands of men to decide when to kill them?
How dumb to think it will never be a member of your family that someone will decide needs to be done away with - against your own wishes. All they need to do, is have a hospital policy that withdraws care at a certain point - then you can move the person or not to another facility.
The purpose of this is never for kindness for the victim or the family - it will be purely financial.
Of course, they will couch it in kindness/relieving suffering/allowing a peaceful exit - but, nevertheless, it is killing. And we are all suckers to fall for that rhetoric.
Why should we allow any to say others have to die - they do not have that authority and it is not their call.
Good points - you made me see this more clearly.
Many family members do not even care about those being offed, why would we ever think hospital administrators cared or those making the end-of-life laws?
And, I think it is going to take an uproar to bring light on this - as it is very couched in "care", "ease suffering", "not prolonging the inevitable".
Thanks - your name is my main Texas contact. Wonder if it would do any good on the state forum? I tend not to read that but don't know if others do.
We need to investigate exactly what the laws in Texas are.
I suspect it may be happening more often than one might think. An elderly family member calls the hospital, goes before anyone around thinks about it, and suddenly dies. Or a family member who is influencing the patient goes ahead before anyone suspects and acts even if foolishly, and it is over. Then it is easiest to just deny and move on.
I can think of two close family members, long distances apart, and a good friend where these circumstances occurred, each one a surprise death. Am I suspicious? yes of each one. But, naively, I wasn't at the time.
There were so many weapons and even the words of the police officers were weaponized.
By the way, Randall Terry is still running against Senator Jim King of Jacksonville. Details are at www.randallterry.com.
You can visit Terri Bay at your convenience. Thanks for dropping by. I'm starting my web site again. I calculate it will be up by the end of the week.
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