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"Fearrogance in the Vegetable Patch"
National Right To Life News
December 2003
by Rus Cooper-Dowda
pp. 8-9

As a young doctor's wife I frequently heard my husband and his pals discuss "The Vegetable Patch", that part of the Intensive Care Unit 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", "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 of the real and great odds it will really happen someday.

How else to explain how the Hemlock Society (with their new euphemistic name) and the ACLU refuse to stop labeling all people concerned about Terri's civil rights as the fringe element? The members of such groups (that I belonged to before the onset of my disability) need to believe that Terri's and my experience stays 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 aging 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 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 a 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 how me that included stopping all care of any kind and sending me to a nursing home to die.
I was 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 move and making noise during those dreaded "rounds." 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" it 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.

Out 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 Shindler-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.

"Fearrogance" of that state where you need help with a spoon and that daft ham sandwich the husband's attorney keeps citing.

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 medical and legal obsession with the myth and idea that we can control all aspects of life for ourselves and others. I know this belief as 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 changes 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?

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 on 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 full of "Fearrogance."

"All I Ever Wanted to Do..."
"Update"
International Task Force on Euthanasia and Assisted Suicide
Year 2003 Volume 17 Number 3
page 6

All I ever wanted to do was live, have a child and teach since I was five years old.
But events in the mid-1980s almost stop all of that from happening.

Due to being wildly misdiagnosed, garden variety lupus spun out of control. I sank into nearly continual seizures. That earned me an extended stay in the intensive care unit (ICU) of a prestigious east coast hospital. It was so sad. I couldn't think, talk, bear children or have a meaningful life again. I had to be allowed to die with all basic treatment and stimulation stopping since I wouldn't notice anyway. Of course I would never be able to write again. The prevailing opinion was simply that my death would be better than my adequately treated disability. My husband sided with the physicians.

So I obliged the staff and died. NOT!

Here's the real story -- I could actually hear all these conversations about my futile care and demise held in my room.

I desperately started trying to communicate. When talk of my pointless life would commence first I tried moving to show the topic really mattered to me. In response I got sedated for seizures.

Then I tried vocalizing. It sounded like moans. I got more sedation for my efforts.

I switched to writing in the air, begging for my life. They didn't get it. So, I began writing my plea backwards hoping they could get it that way. Nope.

At that point I also started memorizing the ICU gossip shared over my body. I heard a lot 24/7 since I was treated like a piece of furniture. As I was not "really there," it was okay to complain about my care while "having" to "move and dust me." I heard that last phrase more than once.

I also heard allegedly funny staff arguments over what kind of vegetable I was in the intensive care garden patch.

In absolute terror at that point, I noticed a wall calendar across from me that didn't say the month, but did say the date. I picked up that the top page read "TODAY IS 21." I immediately started drawing in the air what the date was during rounds. No one noticed -- not even when I changed the number as the week rolled around.

Except for a single nurse ...

She began to work with me by my blinking. When she brought this up to the medical staff, the response was that my blinking did not fit the diagnosis. She couldn't record my budding conversation.

We continued after her shift with ink on my fingers, a clipboard and increasingly complex communication boards made from old file folders and markers.

Her loving work earned me a final session as to whether I was already "gone" or not. I was asked if there was anything I wanted to say. I replied that I needed a divorce to get therapy.

No one ever doubted my presence again.

I still had to struggle for the most basic things like trips for follow-up care, food, water, getting stitches out, counseling, and maternity care. Yes, not too long after that I found out my sterile problem was going to be born in the fall. That son started college this past fall. I earned another master's degree. Obviously I am thinking and writing for you to be able to read this now.

I believe Terri Schindler Schiavo is in a very similar situation to mine back before my son was born.

Anyone who is or knows a woman should be very concerned. Disability can happen any time and anywhere due to illness, accident, or genetics. It is an equal opportunity minority - one that people can involuntarily join instantly.

Women who lose their caretaker status are particularly vulnerable when they need that same level of attention themselves. Indeed, most wards of public guardians are women with cognitive-impairments, precisely the group mostly likely to be starved and dehydrated across all institutional settings.

Therefore, know that supporting Terri's right to live is in your own best interest. I am very proud to say I became an exceptional education teacher as a direct result of Terri's inspiration during the October 2002 hearing when, once again, Judge George Greer ordered her death by starvation and dehydration.

Rus