Last month I wrote about Timothy Bowers who died within 24 hours of sustaining a devastating cervical spinal cord injury. Mainstream newspapers dubbed him the deer hunter as he fell out of a tree stand. Like many people with a disability I found the circumstances of Bower’s death deeply upsetting. Equally disturbing was the way the end of his life was framed by bioethicists--they hailed Bower's death as being a paragon of patient rights and autonomy. I expected Bower’s death would go viral. To an extent it did. There was an explosion of articles published a few days after Bower died but the stories went no further. Indeed, Bower quickly became newspaper filler. What all reports failed to dele into was the fact Bower’s death was highly unusual. It is not every day a person experiences a spinal cord injury and at the family’s request is removed from a medically induced coma. Upon consciousness Bowers was told of his condition and a grim portrait of his future was drawn—he would be a vent dependent quadriplegic, likely live in a nursing home, he would never hold his soon to be born child, and that the quality of his life would be quite poor. The message was not subtle: death was preferable to life.
There is no question that a cervical spinal cord injury is devastating. There is no question that life as a vent dependent quad is very difficult and expensive. These observations do not imply a very good life as an upper level vent dependent quad is not impossible. I have known a number of men and women who have lived such a life. They got married and divorced. They had jobs and many earned an advanced degree. I would consider these people ordinary; but they are ordinary only because adequate social supports exist. I certainly never questioned the quality of their life. This is exactly what Bowers family did. It is exactly what the physicians in charge of his care did. It is exactly what bioethicists did applauding Bowers supposed autonomy. This is ethically objectionable and grossly misleading. It is a threat to my existence and every paralyzed person.
Let me inject salient facts that have been ignored. Do not trust me. I have a PhD not an MD. Here is what Richard Senelick stated:
In this case, we have an acutely injured man who was under sedation in order to tolerate his ventilator. Paralyzed and intubated, a patient can usually only respond with head nods or eye blinks. Even if the sedation is discontinued, it would be difficult to have a detailed and meaningful conversation about what it means to be paralyzed and on a ventilator. If you are trying to make a decision on whether to live or die, you should have access to detailed and accurate information about your condition. It is not easy to make a “rational” decision in a highly emotional situation, but you must try.
What people fail to realize is how biased people are against disability—especially any disability that requires a vent. When I use the term people I am referring to the public at large and every health care worker. Put yourself in Bower's situation. You go out hunting and wake up with a vent in an ICU. I do not think it was humanly possible for Bowers to make a rational choice. I have been in many an ISU as a patient. It is a technological wonderland where day and night merge. Sensory deprivation is extreme. All patients are heavily medicated many of whom are at the end of their life. This was not the place or time for Bowers to make a decision to live or die.
Carlson gets to what is not said in an ICU or other hospital settings. She wrote:
No one should ever assume someone with a severe spinal cord injury would rather be dead than alive, but most people who are able-bodied assume this, even medical personnel. All should be leaving their bias at the door instead.
Carlson is hopelessly naive. Bias exists in every hospital in the nation. Mistakes happen and even highly educated people can be bigots. In my opinion hospitals are among the most hostile institutions when it comes to disability based bias. We people with a disability represent the limits of medical technology and the ability to cure a host of disabling conditions. We are thus symbolic failures. Worse yet, we require more labor. We also require advanced technology that is expensive. This is a recipe for death and disaster. And this is what happened to Bowers. He needlessly died and was given the illusion of choice under impossible conditions. I know all about this as a hospitalist once suggested to me death was preferable to a long and arduous recovery. Carlson maintains:
most people would rather die than live with a spinal cord injury, even doctors and nurses think these things in secret. They shouldn’t be blamed for thinking these things, but they shouldn’t let their opinion on the matter influence what they tell family and friends of the newly injured. You have no idea “what’s worth living” until you’re in the reality yourself.
Again, Carlson is naive. But she does have a point. Bias is unacceptable. Bowers death is a sad example that bias can be lethal. Senelick drives home this point at the end of his article.
We are on a slippery slope when we quickly make the assumption that people with severe disabilities would not want to live and could not experience quality in their lives. It is very dangerous when society views the severely disabled as not worthy of the same treatment of the able bodied. Every day we pull out all the stops to treat an elderly person with a heart attack, but then assume that someone who is paralyzed, in a wheelchair and on a ventilator could not possibly live a “quality” life. That was the assumption made by the people in Indiana.
I am regularly accused of being bitter and angry. Bitter I am not. Angry yes. I not angry about my disability. If anything I am quite proud of my body. I am angry about social injustice. I am angry about disability based bias that hampers my ability to lead a good life. I am angry that almost every time I travel or leave my home it requires advanced planning and all sorts of mental gymnastics on my part must be performed. Spontaneous actions are impossible in the land of disability. Our physical and social environment is designed for bipedal people. Problems abound as do mistakes. Oh how weary I am of this line of reasoning. To label barriers of inclusion as problems and mistakes is wrong and undermines all efforts of disability rights activists and scholars. The social and physical barriers I encounter are a civil rights violation. My existence is a problem and mistakes are made because my presence in not wanted. I really do not want to hear it. I do not want to engage with others unless it is done on an equal plane of existence. Lives are at stake. Bowers death proved this.