|(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.