Friday, November 13, 2015

A Living Hell

(Photo Description: A skeleton prays while being engulfed in flames in Hell's furnace.

I want to be a respectful as I can in the post I'm writing today. I have decided not to use the last name of the actor involved or his mother whose words I will be quoting here. His first name appears in the quote I am going to use and I don't see a way of avoiding that.

On my Facebook page I saw a 'trending' article about an actor, just 40 years old who died as a result of a car crash. Even though I'd not heard of him I read the short article in Time magazine on line as well as another in People on line. Both described his accident, which sounded horrific, and interviewed his mother who was there with him when he died.

Now, we have to remember that she just lost her son, and is finding a way to deal with that. Near the end of the article, she is quoted by saying that though he fought valiantly to live ... “Had Nathaniel lived he would have required a ventilator and would never have been able to utter one more word and would have been sentenced to life as a quadriplegic. A condition that Nate would have never have been able to tolerate. By God’s love and mercy Nathaniel was spared this living hell.”

The 'living hell' from which the actor was spared is a daily experience of many people with disabilities. In fact, those same people with disabilities don't typically report that their lives are hellish and aren't rolling themselves off cliffs. The general ignorance about life and quality of life of people with disabilities is concerning. The denial of access to media and to mainstream sources for sharing our lives, our voices and our stories is a death-making barrier. People don't know us so they imagine us. People don't hear our stories so they, without recognizing their own ignorance and prejudice, write their own. (I am using 'ignorance' and 'prejudice' in the softest way that they can be used - people, including all who read this and the one who writes it, are all unaware of their own ignorance and prejudices. I am not speaking of purposeful, stubborn ignorance or blatant, hateful prejudice.) We, as people with disabilities get shoved off into the one's upon whom God's grace had not fallen. "There for the Grace of God go I" being a statement of smugness and arrogance.

I am also concerned, even more than the idea that death would be preferable to life for a young man, that the media chose to publish the quote. Both People magazine and Time magazine chose to highlight the quote in the articles. Didn't they think that perhaps they would promoting the current agenda to see disability only in the looming shadow of the 'assisted death' movement? Didn't they think that people with disabilities might be readers of this story? Fans of this man? Affected by their words? Of course not! Because we don't exist in their minds at all. We exist in the fringes of their consciousness, where trolls and ghouls and things that go bump in the night exist. I'm willing to bet that neither author gave a moments thought to what they printed. Not a moment.

But we, people in the disability community, need to see this as a continuing failure to communicate with the larger community. We need to devise strategies to get our stories heard and our voices considered. The continued failure to do so, I think has chilling consequences.


Colleen said...

Dear Dave: it's true. We all need to hear the voices of people with disabilities and we need to hear what life is like when one has a disability from the perspective of the person with a disability. We, the general public, do need to hear that. But, and you knew there was a but coming, I think those very unconscious prejudices that you speak of prevent us from hearing it. Mention disability to a non disabled person and they immediately think of what they wouldn't be able to do. And that thinking makes so much noise that they can't hear the part about how life with a disability really is worth living and more. There are people talking about this. I can think of you, Catherine Frazee, and Loree Erickson right away. But there are not people listening or people can't hear you over their own prejudices. How does one quiet the unconscious prejudices long enough to hear the real story? Colleen

Anonymous said...

I have to say, Dave, I disagree with you on this. I understand your position, and while I believe it has merit, I can also see the mother's perspective, having watched her son transform before her eyes into someone in serious pain and (probably) a shadow of his former self. Personally, I have a family member who as a result of their illness, has become a quadriplegic and at this point struggles to speak- they have made it very clear that their quality of life is low and when they suffer their next health "attack", they would like to be unassisted and pass, as living in this state is too much for them to bear. I love this person and it breaks my heart, but after years of seeing them struggle with this, I can understand their perspective and will honour it.
Now, I do understand the difference between the individual themselves saying this, and someone on the outside saying the same thing about someone else. We have to let everyone tell their own story, honour their wishes, and not claim ultimate authority over someone else's life and let that prejudiced perspective unfairly colour someone else's experience. But, I have to say, I don't believe this situation is as black and white as you see it. The son may have relayed his wishes to the mother, and in that case she would just be parroting back his own beliefs about the quality of his own life and what was personally acceptable to him and what was not. I don't know. What I do know is that she is obviously grieving, and should be given the benefit of the doubt because we as people don't always say the right thing the right way when we are experiencing such sorrow. Just my two cents.

Alicia Butcher Ehrhardt said...

My life with disability hasn't been a picnic.

But every second of it has been worthwhile, even when I'm not using my time as well as I might.

And this actor MIGHT have gotten better. If he were alive, doctors and his mom would be working to help him communicate, live his new and unwanted but HERE life.

Christopher Reeve never got a lot better - but he lived and was loved and managed to do a LOT of things. Stephen Hawking has been a curmudgeonly treasure. Michael J. Fox is USING his disability and still acting.

While there is life, there is hope. WITHOUT requiring miracle cures (not that we should stop working on cures and improvements, but we have to live meanwhile).

Laura said...

Saw that too thought the same thing, but I did notice that when she was quoted in the media, most took that part of the quote out. But like you I think it's important to she has had a terrible shock.

Anonymous said...

Well said.
I wish the press were more circumspect in what they choose to publish. I guess their proirites are sales/hits/clicks, not morality and sound conduct :-(

AnyBeth said...

There was a survey published in the BMJ (with full article now on BMJ Open) about subjective quality of life in patients with locked-in syndrome. (Look up "Steven Laureys locked in syndrome") Only about half participated, but many of those judged themselves happy. From the results section of the abstract:

"Variables associated with unhappiness included anxiety and dissatisfaction with mobility in the community, recreational activities and recovery of speech production. A longer time in LIS was correlated with happiness."

Even when it came to locked-in syndrome, dissatisfaction had more to do with social aspects than the disabilities themselves. Seems for many people with LIS, so long as they've had time to get used to the new normal, if they can get out in the community, if they can be included in fun things, and if there's a decent communication system, feeling satisfied is likely.

What doesn't help? How about the ideas that you're better off dead. Sympathy toward murderous caregivers. (As one with significant brain damage with many cognitive effects, I particularly hate anything along the lines of "the person that we knew and loved is dead.")

When people without disabilities say these awful things, it makes me angry, white-hot firm anger. When people with disabilities buy in, it makes me frustrated, sad, and sometimes it makes me feel sick. Aunt's boss's husband had an accident (marvelous fall, maybe?) that he survived with mid- to long-term consequences. He was told that after his two months in the hospital, he'd need to use a wheelchair for at least 6 months more and use a feeding tube for longer, both possibly permanently. He said no, he couldn't live like that and refused. Within six weeks, he was dead. If he'd given himself the time to get used to that new normal, he may well have been no less happy ...but he only gave himself time to starve. I grimace at the recollection. These ideas have consequences, some of them deadly. The media would do well to consider this when choosing their portrayal, including the quotes.

Anonymous said...

I thought the same when I read the article on line. My second thought was about you Dave. I saw the red flag waving. My heart goes out to her in her loss, but not only is her theology off, but her views on living with disabilities is uneducated. God doesn't "take" people, He receives them. And as you aptly stated, living with a disability is difficult, but not hellish. Sad situation all around.

Belinda Burston said...

Chilling consequences indeed. I participate every year in Holocaust Education Week events, and am reminded afresh of the horror that ensues when "mercy killing" becomes acceptable.

Princeton Posse said...

Late entry: I was thinking of you Dave this morning when the news reported that there would be no jail time for a teen who murdered a policeman. Judge Alex Sosna told a packed courtroom that "Imposing a custodial sentence will not make SK more accountable, he is already serving a life sentence, imprisoned in his wheelchair". I find this very disturbing.