I’m writing this after coming home from work with allergy eyes so glassy and red that I look like a roady for a Cheech and Chong reunion tour. It’s March 31 and, although I should have set to write something thoughtful and meaningful by now, it’s been quite a struggle. Writer’s block, mixed emotions, reopened wounds and a great many regrets have kept me from the chore. I had to wonder what particular piece or angle I’ve not yet covered and came up empty-handed. But, I simply couldn’t ignore it any longer.

Five years ago, on this day, Terri Schiavo lost a years-long battle for her life. At the hands of the Sixth Circuit of Pinellas-Pasco Counties, Schiavo was ordered to have medically-assisted nourishment withdrawn from her and was denied the provisions of food and fluids of any variety. After over 13 days without so much as a chip of ice on her tongue, she succumbed to dehydration and died on March 31, 2005.

Her family, Robert and Mary Schindler, held a memorial service several days later in the town of Gulfport, Florida and I spoke, for a brief time, to the congregation that assembled there. I talked about the value of putting aside differences and embracing others in the light of something dramatic and profound. I thanked Terri’s parents and siblings for teaching me the real meaning of friendship. I tried to underscore the importance of valuing all human beings, be they able-bodied or not, and I expressed my deep regret that Terri Schiavo had not been valued in that way.

Then, I went home to an empty house and drank and sobbed until I was no longer capable of engaging in either activity.

I hold very firm the belief that our society lost so very much more than just a single individual that day. Somehow, we’ve lost a bit of innocence. Somehow, we’ve lost touch with what’s important in life’s journey as well. At least, part of it.

I had always thought that the greatest measure of our wealth is how much we’re willing to give away. Seems to me that someone rather dear to me made mention of this phenomenon a good number of years ago. And, with Terri’s case, many people came together on a single, clear and precise purpose: to protect the life and liberty interests… of a stranger.

People from the disabled community, pro-life groups, religious groups, legal aid organizations, medical professionals and your garden-variety community members all put their hands into this garden to try to cultivate a solution that made sense for someone they had never met. Of those people, the vast majority had nothing to gain, had at least a bit to lose and had no guarantees of the ultimate outcome.

Though Terri’s death came wrapped in unimaginable sadness for her family, her parents and siblings took with them a small amount of satisfaction. That satisfaction was in being under the obligation of strangers who reached out to them and to Terri. Indeed, without the kindness of strangers, the Schindlers’ battle would have been a far more frightening and lonesome prospect.

Yet, here we are: five years later and some of those support networks for Terri’s family (and a great many other families) have either disappeared or have become otherwise engaged. Mind you, these things happen. Your luxury of time certainly gets impinged upon. Your focuses can change from time to time. Everyone is feeling a pinch, economically or in other aspects of their commitments. I do, as well.

But, let’s look at a very broad analysis of Terri Schiavo’s situation and see if there is something here that impacts us all.

A young and healthy woman becomes brain injured and determined incapacitated. Her guardian relinquishes his decision-making authority to the circuit court. The circuit court judge becomes a de-facto guardian (as well as the adjudicator of the guardian) and doesn’t enforce a known medical directive. Rather, he orders that all forms of nourishment and hydration be withheld from her. She dies. She dies because the circuit judge orders so. She dies because she is disabled.

Armed with the knowledge that an actor of the state took virtual ownership of a citizen’s body and life and that this particular actor of the state created the environment under which that undying person was deliberately made to die (for circumstances beyond that individual’s control), would you not sit up? Take notice? Get involved?

Would you were it your own kid? Of course you would.

Five years from Terri’s death, I am witness to an uncloseted and very open mockery of people with cognitive disabilities in what I view, what I read and what I hear. Five years later, I know of virtually no one who has a protective medical directive that ensures they receive the types of health care they want to continue, in the event of catastrophe. Five years later, there is no public outcry for the protections of the life and liberty interests of our disabled, elderly and chronically ill citizens. And, five years later, I see the abandonment of persons with complicated life circumstances becoming more and more acceptable.

We started a good thing and, somehow, it’s been muddied up or forgotten.

But, let’s be honest. The fashionable thing (at the moment) appears to be the whole right to die movement. I’m a marketing person and can tell you – these people absolutely know how to market.

The product might suck, but the message can be compelling. Look back to those posters and handbills produced by the eugenics campaigners in the US as well as those in the era of Europe’s Third Reich. They sold, baby. They definitely sold.

I’m holding out on the hope that we’re all a wee bit wiser now. That we understand that – what happens to the least of us will certainly happen to the rest of us. That’s the selfish part, but I don’t think (in this instance) it’s such a bad thing to be selfish.

Perhaps, if I wish really hard and kick my heels together, we’ll put aside personal and world-view differences for just this one thing. Maybe we can come back to the table as neighbors and friends and settle firmly in the belief that – no matter what your challenges may be – you mean something. You’re worth something. You’re someone.

I can also wish away the oak pollen that’s turning my eyes into orbs of fire, but I don’t imagine I’ll have much luck with that. The other bit, however, might be within reach.

Mr. McFarlane,

I have to come clean and tell you that I’m not a regular viewer of your program, The Family Guy. I’ve probably seen two episodes since you’ve been on the air. Until now, it’s not been a matter of the content. I’m just not that into television anymore. Perhaps it’s a sign of old age.

In any event, I write to you now about an episode that aired on March 21, 2010. By now, you’re surely aware that this particular episode has stirred some controversy. While some will say it’s wiser to ignore things instead of creating publicity, I’m sure a show as successful as yours doesn’t need to lean on me for additional hype. So, I’ll speak my piece.

Naturally, I’m referring to the sketch, “Terri Schiavo: The Musical”. Before you discard my letter and mutter, “Just turn the channel, lady,” to yourself, let me tell you who I am.

I volunteered as a webmistress and media spokesperson for the family of Terri Schiavo from November of 2002 until March of 2006. In that time, I ran the website, communicated updates and dispersed court documents to those in the news media who covered the case and I spent a good deal of time on talk radio, discussing the goings on in the court proceedings.

I also became quite close with Terri’s family. More importantly, I got to know a great many people in the disabled community. The experience – as a whole — wasn’t what I’d call a happy one. I’ve seen some astonishing things.

Mr. McFarlane, I don’t claim to be an arbiter of what is or is not acceptable humor or creative content. I’m a member of the creative services industry myself and am loathe to hear even suggestions of censorship or any encroachments upon free speech or creative expression. They are rights that I consider utterly sacred.

Having said that, I also believe that – with all rights – we have some basic responsibilities.

I was forwarded a link to the Hulu stream of March 21’s Family Guy. It wasn’t from a Facebook friend or a Twitter poster. It was actually from Terri’s own brother and, needless to say, he was saddened by the content.

And, even though I’ve seen some pretty snarky satire on Terri and her situation, I have to tell you; I was completely floored by the clip. Characters singing about pulling the plug on someone, calling her a plant and a vegetable.

Honestly, I tried to be objective. As you can imagine, that’s not always easy for someone close to a situation that is being parodied. But, try I did and, I simply couldn’t find the first bit of humor in the sketch. To be perfectly honest, it seemed like abject cruelty. Bullying. Dehumanizing.

Mr. McFarlane, I’ve dealt with the issues of the life and liberty interests of profoundly disabled people for over 7 years now. Specifically, those people who live with brain injuries and cognitive disabilities. Perhaps you are not aware, but these people face a battery of injustices: socially, legally and with regards to their expectations of health care. Even American soldiers, returning from Iraq and Afghanistan with traumatic brain injuries, are receiving what amounts to a song and dance from a number of our Veterans Administration hospitals — instead of the care they need.

People who have been rendered helpless by brain injuries or other neurological events are not a separate and unequal class of human being, Mr. McFarlane. Of that fact, I am absolutely certain. Still, they are typically treated as such with certain rights removed by probate courts, their lives continuing at the pleasure of others and what has been (until recent years) a somewhat closeted prejudice against them. These days, that prejudice seems to be very open and acceptable.

Again, I tried (almost desperately) to find a redeeming point in the Terri Schiavo sketch that you produced and that Fox aired. I simply couldn’t. In the end, it just struck me as bigotry and cruelty.

Even if you have not an ounce of empathy or sympathy for Terri’s surviving family, I’d ask that you consider how other disabled people and their carers must of felt if they saw this sketch. What message are we sending them? That they aren’t in the club? That their problems are fodder for the rest of us?

Satire, I think, works pretty brilliantly when it attacks the powerful, elite, obnoxious, careless or narcissistic types we’ve all had the displeasure of running into. When it’s levied on someone who is helpless and defenseless, it just seems a bit cowardly to me. Maybe that makes sense to you. Maybe it doesn’t.

No one wants to be put down or marginalized for something they have no control over.

You know, when I heard that Mary Schindler (Terri’s mother) had seen the clip, I was rather cross. I’ll admit it. I know, first-hand, the devotion this woman has for her family and her loved ones. I haven’t the words to articulate to you how utterly destroyed Mary was when Terri died. You may not agree with Terri’s family trying to protect her life. You may not agree with how they went about it. But, I can tell you that desperate parents sometimes do things that outsiders don’t understand.

It seems clear that you don’t understand the points of Terri’s case. Had you, you wouldn’t have depicted her character as someone hooked up to a slew of mechanical life support machines. You see, Terri only needed a feeding tube to deliver food and water – basic necessities of her life, mine and yours.

Mr. McFarlane, I certainly don’t seek to censor you. It wouldn’t be proper. But, understand that – inasmuch as you have the right to produce the type of content you see fit – others have the right to admonish you for it, cease patronage of your sponsors for it and express displeasure with it. When it comes to the struggles that people with disabilities face, I have to side with those interested in protecting the disabled and not those who dehumanize them.

In parting, I hope you will consider the very real plight of the disabled community as well as the challenges that they and their families face each day. Sometimes, there are victories. Sometimes, there are real human tragedies.

None of us are really any further than one life event away from it.

Regards,

Pamela F. Hennessy
Clearwater, Florida

Video

My father died in 1997 at the age of 55. Although my parents divorced when I was too young to understand the process, and my father was not always easily accessible to me, he more than made up for the lost time when I needed him or when my older sister needed him. I’m certain people judged him, based on their own world views of what a father should be. Me? I was just grateful that he had my back when I required a bit of reinforcement.

Beyond that, my father was an amusing character. He had a decidedly odd sense of humor, a love of animals and the earth, a fondness of little old ladies, pancakes, beer and oddities. My father was a talented doodler and produced some rather remarkable art in his off hours. He had a ferocious temper when it came to the impolite behavior of those around him. He was a gentleman, a bastard, a hero and a humble lad.

Though it may be difficult to string all those personality traits together, trust me on this one. It happens.

In my eyes, a father’s greatness did not spirit out of his ability to earn more or provide a groovier family room carpet. It came from a father’s ability to love, honor and protect his children.

It’s not at all surprising, then, that I took to a man by the name of Bob Schindler with rapidity. Bob was the ‘all of the above’ choice when it came to matters of family and community. Schindler was a decent bloke and sorely misunderstood by those who felt qualified to judge him.

Perhaps, you know the name. Bob Schindler was the father of Terri Schiavo. Terri was the profoundly disabled young woman the Florida courts saw fit to dehydrate to death, simply because she lived with a marked cognitive disability.

I took on the task of helping Bob Schindler, his wife Mary and his two youngest children in their effort to protect Terri’s life. They did all the heavy stuff. I just maintained a website and dealt with the news media.

But, bringing such an undertaking into my life also brought with it knowing and understanding Terri’s family. In particular, I got to know her dad.

Bob Schindler was your garden-variety cool guy. We oftentimes talked about politics, religion, the weather, rock and roll, the idiocy of the news media and so on. He retained that long-lost ability to disagree gracefully. He never ended a telephone conversation without telling me to get some rest or drink some orange juice.

This was a man who was facing the loss of his daughter to a court decree. But, beyond all his troubles, he (and his wife, Mary) had the unique ability to still give a damn about the people close by.

I consider it a lost art of common humanity.

He was enthusiastic about good nutrition and whole foods, but he dearly loved tea cookies. He knew he should have walked more, but he spent the better part of every 24 hours behind a computer screen, searching for something – anything – that could benefit or protect his eldest child. You could probably call him obsessed, but how else should a father be?
He drank way too much coffee.

He rarely used foul language.

He liked Monty Python’s Flying Circus (I reckon this was a guilty pleasure).

He loved a dopey joke.

He preferred comfy shoes.

He was quick with a hug.

He adored his wife.

He adored his children.

So, that’s what you want in a husband and father, isn’t it? Pity that Bob Schindler was so mangled by the news media for just doing what good men do.

Throughout the years that this unassuming and affable man from Philadelphia did everything in his power to look after the first child he and his spouse brought into the world, Bob Schindler was admonished. And, that’s a pity.

The news media and editorialists painted Bob Schindler as a religious whack job and a speak-piece for the Evangelical Christian community. He wasn’t. Though the Schindler family (and, Terri, in particular) are observant Catholics, nothing they did for Terri was driven by any church or any ideology. It was far simpler than that.

Bob, Mary, Bobby and Suzanne Schindler all held the firm belief that Terri was a human being, guaranteed of certain unalienable rights, good and innocent, loved and worthy. And, most importantly, that she would have never agreed to the course the circuit courts laid out for her.

Bob Schindler would go broke defending his daughter’s life. He would be called a religious nut by the news media. He endured unbelievable scrutiny and blow back – just for doing what parents typically do.

Bob Schindler was not a crusader. He simply believed a life is a life is a life. I’ve seen him reach out in affection to disabled people, elderly people, children, skateboarders, punks, priests, rockers, housewives, bank tellers, burger sellers, homeless people, cats, cyclists, cooks and the occasional pest control specialist. He just had an empathy for the human condition.

Amazing it is, that a man so filled with appreciation for the good stuff around him, a deep devotion to his family and a love of life could be so carelessly painted an agenda-driven aggressor by people who never had the pleasure of shaking his hand.

I, on the other hand, know better.

Bob Schindler died on August 29, 2009. He never met my father, but I rather suspect the two would have enjoyed the hell out of one another. Both understood and honored the relationship a girl has with her father, both had odd senses of humor, love of life, appreciation of the world, kindness towards strangers and a deep understanding of what it means to be a man.

God rest you, Bob Schindler. You took over where my dad left off.