Darrow Miller and Friends

Life in a “Locked In” State

People in a locked-in state can have a real life?


When it comes to referencing disabilities here in the West our vocabulary has changed. At one time, anyone with a mental illness was labelled “crazy” or “insane.” Those with slower response times were “dim-witted.” A cleft palate was a “hare lip,” an individual with a lower IQ an “idiot.”

It is good that society has repudiated these terms because they all disparage the dignity of humans made in God’s image (and thus disparage God Himself). Indeed, the change in vocabulary suggests an increased respect for our fellow human beings. That’s a cup of refreshment, one that could be supplied only from the Judeo-Christian fountain. The cisterns of atheism, evolutionism, materialism can produce nothing of the sort.

“Love does no wrong to a neighbor; therefore love is the fulfilling of the law,” (Rom. 13:10 ESV).

But somehow, the same society that has improved its language for some marginalized people has also diminished its value for others. In fact we have rendered some unworthy to live. That’s pretty sobering for several reasons. Here’s one, framed as a question: Who are we to decide that a life is not worth living? That’s Nazi behavior.

Nazi deplorable attitude toward life
Sad remembrace at Auschwitz, photo by Paul Arps

Oh, but we’re not Nazis. We’re so much more refined and courteous, as Darrow wrote in Civilized Barbarism: China’s Abortions and Your Face Cream. We’re so much better than the brutes of history, so nice, not savage like them, so cultured to their uncouth. So 21st century.

Right.

In fact, we are so sophisticated we know when death would be better than life. For example, consider someone in a “vegetative” state. “Locked in.” Technically alive, but practically as good as dead, in the judgment of some. Without any “quality of life.” Mercy means allowing them to die with dignity.

But what if we were not as clever as we thought?

Some locked-in people say they are happy with their life

I recently read a story that upends our assumptions about individuals in a vegetative life. Some in that condition, by their own testimony, are happy.

Here’s a news story from last January that not only offers comfort to the family of a locked-in loved one, but also devastates the notion that a so-called “vegetative” state is worse than death and it’s charitable to kill them: “Locked-in patients tell doctors they are ‘happy’ after computer reads thoughts:”

Locked-in patients trapped inside their paralysed bodies have told doctors they are “happy” using an astonishing new brain computer interface which deciphers their thoughts.

In a groundbreaking experiment, four people who were incapable of even moving their eyes, were able to respond with “yes” or “no” answers to spoken questions.

On seven out of 10 occasions the patients said they were happy despite their utterly debilitating condition which means they require round the clock care for all their basic needs. 

The story of Martin Pistorious has some parallels, as well as some contrasts. Most importantly, it shows the true nature of a system that would tolerate killing someone because we think they they don’t need to live.

At age 12, Martin fell into a coma and spent 13 years in a locked-in state. His parents were told he would permanently be in a vegetative state until he died.

What no one knew until he emerged was that, for most of that time, he was aware of everything around him: the conversations, the news (including 9/11, Princess Diana’s death, et al), the abuse perpetrated on him by “care givers,” his parents’ struggle to cope with what to them was the loss of a son.

Here’s where Martin’s story contrasts with those noted above. For years he struggled mightily with the horror of being invisible to everyone around him, terror at the prospect of an entire life in such a state.

Imagine being unable to say, I’m hungry, I am in pain, thank you, or I love you. Surrounded by people, yet utterly alone. Wishing you could reach out to connect, to comfort, to participate, for 13 long years. That was my reality.

Watch the video, and think anew about how desperately unqualified humans are to determine who is worthy of life, the gift of God.

 

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. We must work the works of him who sent me while it is day; night is coming, when no one can work.” (John 9:1-4 ESV)

– Gary Brumbelow

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Gary is the Disciple Nations Alliance editorial manager. He manages Darrow Miller and Friends and serves as editor and co-writer on various book projects. For eight years Gary served as a cross-cultural church planting missionary among First Nations people of Canada. His career also includes 14 years as executive director of InterAct Ministries, an Oregon-based church-planting organization in Canada, Alaska, and Siberia. Gary is a graduate of Grace University, earned an MA from Wheaton College and a Graduate Studies Diploma from Western Seminary. He lives near Portland, Oregon with his wife, Valerie. They have two married sons and ten grandchildren. In addition to his work with the DNA, Gary serves as the pastor of Troutdale Community Church.
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