By Rus Cooper-Dowda
As a young doctor's wife I frequently heard my then-husband and his pals discuss "The Vegetable Patch" - - that part of the Intensive Care Unit (ICU) where the comatose and the neurologically damaged were treated.
I cringed inwardly every time they would refer to their patients as "The Turnip," "The Carrot," and "The Eggplant," but I kept it inside. Only a few months after one such party, I wished I had broken the omerta rule (remember The Godfather?). I suddenly awoke to find myself in the same position as those labeled ICU patients.
I learned in the mid-1980s that my medical circle's callous disregard for their patient's humanity (and then my own) was really an extreme form of what I now call the common "Fearrogance" of living with a disability.
My new word combines the Arrogance of believing one will never be disabled with the Fear that it could actually happen to them someday.
How else to explain how the Hemlock Society (with its new euphemistic name, "End of Life Choices") and the ACLU label all people concerned about Terri's Schindler-Schiavo's civil rights as the "fringe element"? The members of such elitist groups (which I belonged to before the onset of my disability) need to believe that Terri's and my experience is rare and will never happen to anyone they know.
But it isn't rare and it can happen - - to you or someone you know. What people don't realize is that there are more people with disabilities in America than the entire population of Canada. Genetics, accident, injury, and the normal aging process will push most of us into the disabled community before the end of our natural lives.
That rampant "Fearrogance" is why my experience is such an important yet missing piece in the debate over Terri Schindler-Schiavo's "right" to be killed for her "crime" of having a disability.
In the mid-1980s I was 29 years old when my quiet and long-simmering lupus broke forth with seizure activity of increasing frequency. I lapsed into the state where I couldn't talk, move much, or see very clearly.
How deeply I was in my coma-like state will always be a matter of dispute between the players at the time. But I was probably only truly "out of it" for a few weeks at the most.
What I will remember forever is waking in the ICU, a feeding tube inserted into me, to the sight of a school of doctors standing at the end of my bed. I was very glad then that they were going to save me since I was really and truly "back." I was sure they were going to be my much needed life-preserver.
I was sure their attentiveness would include noticing major movement and noise from me when a hypothetical question was asked about me. But to my great horror, after each of my monumental efforts to communicate, the medical team just continued planning an ending for me that included stopping all care of any kind and sending me to a nursing home to die.
I supposedly was in a "persistent vegetative state." As a result each improvement in my condition and my ability to reach out only made them nervous. My life was in great jeopardy.
I tried frantically moving and making noise during those dreaded "rounds." But this intermittent activity was interpreted as evidence of more "repetitive seizure activity." My cry for help earned me more heavy sedation.
I tried blinking, nodding, hand signs, finger spelling, facial expressions, and pointing to symbols, letters. and words on the side of an old file folder. All to no avail.
When I heard they were going to remove life support, I went into a total panic. I tried writing in the air. I spelled "don't." That got me more sedation. I then wrote "don't" backwards. Their response was to consider tying my arms and hands down to protect me from self-injury. This taught me to stop writing, "Don't."
With great difficulty I figured out that there was a "page a day" calendar on the wall across from my bed. Using hand motions, I devised a plan to start spelling out the words on the calendar.
It was my repeated efforts to spell out the same sentence (changing only the last number) that caused one nurse to pick up that the motion of my hands was an attempt to tell them what was on the calendar that day. This insight on her part saved my life!
She put ink on the end of my finger, so I could write the letter "Y" or "N" for yes and no. She started staying after shifts to talk to me - - the only staff person to ever do that. Even after I heard her being warned not to record the results of her visiting and being warned to stop, she still continued to visit. She reached out and facilitated my communication in every way possible.
Our therapeutic meetings had to be brief, late, and very quiet to avoid the notice of most of the rest of the staff who were adamant that all my behavior was nothing more than seizures or reflex. But she knew I was in "there" and took it upon herself to prove it.
Why was she literally forbidden to document my growing and increasingly effective alternative communication styles? They did not fit the existing diagnosis: I was "non-communicative."
This is the same situation Terri Schindler-Schiavo is in now. Only when they took time to listen to the nurse, who pointed out that I was understanding the calendar and also spelling out answers to questions, did they get past the labels.
I sincerely believe, as do many other anonymous and public health care professionals who have worked with Terri, that she is communicating her heart out - - and has been for years. But the filter of learned "Fearrogance" stands in the way of allowing Terri Schindler-Schiavo the same freedom to exist that you and I enjoy.
The question is, Who's next? If people with disabilities can be starved, how about others who are not able to communicate in the "right" way? Toddlers? Nursing home residents with varying degrees of dementia?
What I have come to understand is that my life was threatened by a medical and legal obsession with the myth that we can control all aspects of life for ourselves and others. I know this belief is the most absurd stance possible. I used to hold it myself.
Then experience taught me that life with a disability is fully living, including for people like Terri and me. People often say things like, "I wouldn't want to live like that," because they believe it will never happen to them.
When it does, it's not a bad life or a useless life. It's a changed life. I live a changed and different life now as a person with disabilities with loss of some control and a remaining need for help.
Terri Schindler-Schiavo needs such basic help, too. For example, she uses a feeding tube - - a straw device designed in the 1880s - - to take in her nourishment. Her straw, and the ones we use at McDonald's, both work by air pressure and gravity. What's the big deal there?
The leadership of the national disabled community recently sent a statement to the press, saying that Terri has the constitutional right to live. It parallels the Right to Life movement's efforts of behalf of Terri. Some of us are in both groups, others not.
At the end of the day, members of both movements believe that everyone has the right to life, liberty, and the pursuit of happiness. This includes people with disabilities, who some may not believe represent the physical "norm." There's that "Fearrogance" assumption again.
But, contrary to their preconceptions, I not only survived, I earned a graduate degree. My son recently began college.
I know in my heart and through my own experience - - then and since - - that there are desperate "non-communicative" people with disabilities everywhere who, even now, are blinking, nodding, and pointing to try to communicate. I could do that when medical staff was convinced I could not.
Terri can do that, too. But the powers that be doubt her in the same way they doubted me.
Welcome to a land still full of "Fearrogance."