Google wants to help. It really does. My car has Android Auto and I think it was confused today.
When in the car and connect my phone, Android Auto comes on and displays Google Maps, offering suggestions on times to my usual haunts. Today, when I headed out to play golf today, it kept showing the time to the coffee shop my wife and I visit each Saturday, no matter how far away I got. Tomorrow, I expect it will pop up with the time to my golf course as I usually play on Sundays.
Keep in mind, I am not using Google Maps to navigate to these locations, I never have had to. Instead, Google tracks me through my phone’s GPS. Of course, I have consented to this, so I am not complaining.
But, everything is connected, as Douglas Adams’ Dirks Gently said, and I make all kinds of connections.
Remember, I was off to play golf.
A man comes home late on evening. He sees the porch light come on and the door open. His wife is there waiting for him, clearly upset. Taking a deep breath, he gets out of the car and trudges to the porch.
“Hi honey, I know it’s late. I’m sorry…”
“Where in the hell have you been? I’ve been calling the office and your cell for hours! What in the hell is going on with you? “
He thinks to himself, “Wow, she’s really angry. the truth is simply not going to do. I guess the thing to is to confess to a lesser offense.”
He sighs, “Honey, is the going to be hard for you to say. The thing is, I just have not been happy. I have felt neglected and alone while you have been so busy. So, I had an affair, I’ve been at her place.”
She stares him down. Her voice cuts like a knife, “You lying bastard, I see the grass clippings on your pants, and noticed your clubs were not in the garage. You’ve been playing golf again, you son of a bitch!”
Yes, a very old and bad golf joke. But it came to mind while driving and got me to thinking about predictive destinations. If Google notices that you frequent particular addresses, I can see where this becomes a really bad thing.
“Umm, honey, what’s this address on the display?”
“Gee, I really don’t know.”
“Let’s go there and find out. I’m curious. Google must have suggested it for a reason. This could be fun!”
I wonder if Google and its developers think about these things. This age of near total surveillance has so many things going on. For example, this article about Acension health system tells us about how Ascension is sharing de-identified patient records with Google for Project Nightingale. The goal is to use Artificial Intelligence to improve patient healthcare. But if Google knows most every android users’ location history and can match those histories to medical records that include appointment dates and times, the merged records for those Android users are now fully identified. I remember a news story about this in the last two weeks, but I can’t find it for some reason. So, maybe Google is not perfect. Or maybe not.
Clearly, it occurred to developers after the fact because they added an Incognito mode to Maps that allows you to hide your location. I wonder who complained? And why? Maybe a stronger grounding in the liberal arts and humanities would have avoided the need to add such a feature as it would have been built in from the beginning.
The destination is less important than the trip. That was the moral of Robert Bloch’s Hugo Award-winning short story, That Hell-bound Train, “The joy is in the trip, not the destination.” If Google developers had read that story, they would better understand the risks of focusing on just the destination.
My friend, Chuck Pearson (@ShorterPearson on Twitter) published a marvelous essay last week on his struggle with depression. I’ve thought for a couple of years about writing about mine but could never get around to it. This has been especially true in the last year since Dad died. The beauty and clarity of what he wrote pushed me through the remaining barriers so I could out my depression and share my story.
In November of 2016 I was in a very dark space. There are/were many external reasons, things that been building to a crescendo pitch for years, but ultimately it was a failure to address the fact I had never admitted my depression, nor had I tried to treat it effectively. There was no excuse for this, other than the depression itself. I understood depression to be an illness, a chemical imbalance. After all, my wife was being treated for it, my oldest, and others around me.
I simply didn’t want to deal with it. I was being self-destructive.
I quit caring about myself.
It wasn’t until a very smart and insightful friend asked, “Tod, why do you hate yourself?”
I was stunned. It stopped me cold. I had no answer. But I did understand what I had just learned. It took me several days to absorb it, to come to terms with it. Two weeks later I made some choices.
I went to my PCP told him I felt depressed as a regular, ongoing thing. “Tod,” he said, “You know it is a chemical imbalance. We can can treat it.” Just like that I had a script for a mild antidepressant, starting low to determine its effectiveness.
Later the same morning, I made two calls. One to a therapist that had been recommended to me, one to a weight-loss clinic. I made radical changes to my diet and lifestyle and went to counseling two days a week for several months. It was intense.
Forty months later, I am in a much better place. I’m still on the antidepressant. After ending counseling and just doing the ongoing work required to be healthy, I have started back to counseling. It’s different this time, not just because I have a new counselor, but I am working on something else. Before I was working on the self-hatred thing, now the focus is simply on happiness.
Is my depression solved? No, its treated. As long as I take my script each day, pay attention to life, check-in on myself regularly, and keep my doctor apprised of how I am doing, it’s managed. I wish I had done this years ago. My depression was not new. Looking back it was clearly a part of my life a long damn time.
Like I said, I wish I had taken these steps a years ago. Age 58 is a little late, but damn well better late than never.
Yes, it’s been awhile since I have written anything. Nothing since Dad’s eulogy. I’ve had ideas, but not really the desire to write. Time to get back to it.
I won’t go into the context of why this idea, but there is a reason for it. I was thinking tonight that I would like to move a university. Although, I really want to move two. After all, businesses, large corporations move, why not universities?
Colleges and universities often seem to have just happened in the oddest and least accessible of places. It is just so suboptimal at times because rural institutions can struggle as populations age and dwindle. Less rural institutions may struggle because there is larger, better known institution just a handful of miles away. It seems we could improve on this.
I’ve spent enough time on college campuses, growing up, going to school, working, and touring, that I understand they have ties to the physical place. And of course, an investment in the facilities of that place. But often, it is the history of the campus and its grounds that ties things together.
How important are these things anyway? Is the college the place or the people? Is the history of the campus and buildings really that important in most places? I can point you to one university where none of the original buildings are left. Would it be substantively different if they had simply moved it 10 miles away or across country?
I spent two years evaluating the need for a new public college in Virginia. Things like this happen when local leaders see a college as an economic development strategy. During that time, there was lots of talk of building something from scratch or creating a branch of an existing university. Not once did we talk about just moving an existing institution into place, because of course we would have to build a new campus and do something with the old one. There’s also the buildings that were built with donations and all that goes with philanthropy.
Not all colleges and universities are that successful with philanthropy, so I doubt that is a deal-breaker. As for the existing campus, why not recruit a college that might be a better fit in terms of programs and structures? We have an entire agency, as do most states, dedicated to recruiting businesses to the state, including relocations of an entire enterprise. Why should higher education be so different?
University of Phoenix, Arizona State University, and Southern University of New Hampshire distance programs, and many others, demonstrate that a sense of place can be much less important and meaningful than one might think. I can’t help but think moving some colleges might be a solution to problems of access and better meeting local/regional needs.
As a matter of fact, there is precedent in Virginia, some time in the 2000s, American Public University System (American Military University and American Public University) moved its headquarters and physical presence from Virginia to West Virginia. The primary reason for this move was to under the accreditation standards of the North Central Association’s Higher Learning Commission instead of the Southern Association of Colleges and Schools Commission on Colleges. Of course, APUS is an online university and is thus easier to move.
Now that the National Association for College Admission Counseling (NACAC) has allowed for the poaching of students from one college by another, the landscape of higher ed is shifting yet again. Why not poach entire colleges? Some number of colleges will close, mostly small privates. Often they are located far away from students…maybe more would survive instead by serving a different population.
More importantly, and to the point, I love my wife. She is a big girl. Not plump, not thick, but big. Fat, if you prefer, or obese.
Even more importantly, she is human. She is worthy of respect and dignity regardless of her size.
She has a host of medical issues. Some of these treatable, but they won’t ever change. Some are barely treatable. Others not at all. All these things are part of who she is – a woman in her fifties who knows her body, diagnoses, and her life.
Healthcare is difficult. I know this. I have some training as a combat medic. I know that some aspects of it are harder, physically harder, with larger patients. I know this very well having been my wife’s full-time carer, especially during this recent four-month episode where she could not bear weight on her left leg much of the time. Even though I was there to help her, and fully committed to that, my first priority was to protect my back. In the end though, when one is being paid to provide care, I don’t care how hard it is – DO THE DAMN JOB! If you need help, get it.
Get over yourself and your attitudes.
Look around at the world. It’s well-documented that Americans are much larger on average than fifty years ago. But that is also only a change in distribution. There have always been larger people.
If you’re going to be a healthcare professional, or run a business that provides healthcare, you have to treat the patients you have, not the ones you wish you had. Or those that you *think* you have.
I have some advice on how to do this.
Start by seeing your patient as human.
Assume from the beginning that they should be treated with dignity.
Treat. Them. With. Dignity.
Start with ensuring they have agency in their own care, save in circumstances where this is not possible.
Know that provision of proper care is not an inconvenience, it is your damnjob.
If a patient suddenly screams in pain, STOP WHAT YOU ARE DOING.
Ask what is wrong.
LISTEN TO THE ANSWER.
Trust that the patient knows their body.
Change what you are doing accordingly.
Above all, apply your common sense and critical thinking skills. If a patient presents as having a broken femur that is being allowed to heal, assume they cannot stand or walk on their own. Assume that they will need assistance. Include this in your planning, that includes having enough staff to assist large patients. This all fits within the Hippocratic oath under “first, do no harm.” You should not make things worse.
When you fail to see people as people, fail to give them their humanity, you will almost always make things worse. We see this is in the stories and research that demonstrate the generally poor medical care Black woman receive. We’ve seen this in the LGBTQ community in the height of the AIDS crisis and every time some legislature gets the ideal to allow gay conversion therapy.
The goal of medical care, of healthcare, is to make people better.
That only happens when you treat them as people, regardless of size, skin color, gender, or who they love.
My wife has now been in surgery for two hours after a night and a day of searing pain. She faces weeks of rehab and a painful recovery away from home. All because the staff of a nursing home chose to ignore her humanity, agency, and knowledge of her own body.
They broke her femur through mishandling her.
And then they tried to say it was her fault.
All of this is after a week in the hospital where the first day was marked by staff ignoring her when she kept telling them to let go of the left leg, it it is the one that is broken. Her right hip turns out an odd angle, they look at that and assumed that is the location of the break. They don’t read the chart. They don’t listen. When I got there I made sure it was on the whiteboard, and she made sure the hospital administrator and the head nurse knew about it. Things got better quickly at the hospital.
But it still the same old thing. A failure to see the person, a failure to listen, a failure to know the patient.
“As I was saying in the last class….” This was a favorite way of Dad in starting the first class of the semester. It was a way of ensuring he had each student’s attention through a moment of questioning.
“What did I
Indeed, what have we all missed?
Massa lived a life of passion. Not the passion that you see in movies or read
in books where the main character wakes up to the excitement of life and starts
climbing mountains, running races, or chasing adventure. Instead, my father
lived full of passion for the life of the mind.
the following story during his remarks on the occasion of his 85th
Recently I was called for jury duty.
During the questioning of the potential jurors, I was always the last to be
called on. One question in particular was of interest. “Do you have a
passion? What are you passionate about?” Almost invariably, the responses
were about sports. Football. Baseball. The Cardinals. The Royals. And others,
of course. When he got to me:
“Are you passionate about
“I try to teach passion.”
“I suppose they call you, ‘Mr.
The judge said, “I wouldn’t go
there. That’s Mr. Massa. He has a reputation for passion.”
thing though. Growing up, I don’t recall a single lecture directed at me about
passion. Admittedly, I didn’t move back to live with him until I was 16, so it
might have been too late to have much real impact after short visits and
summers between the ages of seven and 16. Unlike my sister, Daphne, I
didn’t take classes from him or become a communications major. However, I do a
recall number of lectures, monologues, and exhortations, all delivered with a
great deal of passion. I probably assumed at the time that this was simply a
device to gain my wayward attention.
I didn’t realize
at the time that I was being given the roadmap for my life.
When I was
five, Richard Massa took me camping, with the help of his friend, John Graves.
This is an experience that is crystallized in my memory. The first, and only,
time my dad took me camping. There are a number of images from that trip that I
carry with me. Images from a section of wilderness in central Oklahoma. A
little lake. A cliff. People jumping off the cliff. A water snake at my feet. Most
of all, I remember my father waking in the night to shine a flashlight on two
raccoons going through our food. A
moment of wonder for a small boy. A
moment of clear memory 52 years later. Camping was not his thing, yet another
reason these memories stand out for me.
remembers, the man becomes.
and I had the type of relationship that I think is pretty standard for his
generation and mine. Not a lot of touching, not much in the way of chatting, or
expressions of love. During Christmas 2016, when it came time for Melinda and
me to leave, we were standing in the kitchen with Dad and Teresa. Dad said,
“You were a good grandson to my parents, and you’ve been a good son to us.” I
simply replied, “It’s been an honor, sir.”
If these had
been our last words to each other, I would have been fine with that. They’re
not bad words at all. They are somewhat formal and perfectly in keeping with
who he was. They certainly reflected our love for one of another, a love that
was never decorated unnecessarily. It simply was.
also true of his love for his lesser children, my sisters.
I kid, of
course, because Daphne and Sara are marvelous people. Part of the delight of
his life. They have done as he wished for them – pursued their own visions for
The true, endearing
love of his life, his true passion, was, and remains, Teresa Ramirez Massa. They
have been companions, friends, husband and wife, and most of all, equal
partners. For nearly fifty years their marriage has been iconic in their
devotion to one another and their uniquely powerful habit of communication. A habit of communication that made their
marriage what it was. A habit of communication that caused strangers to remark
on how much they talked with one another when in a restaurant.
At their 40th
wedding anniversary party, I told this story:
Richard and Teresa were walking in
the mall one evening. It was a sweetly fragrant evening, and they were happily
Teresa said, “Richard, I’m kind of
He replied, “Yes, and I’m quite
It’s communication like this, and
outrageously subtle humor, that made them such a strong couple.
Most of you
knew Dad as reserved and somewhat formal. He maintained a professional distance
in most spaces. He was keenly aware of his role as professor, church leader,
and community member. He taught me early
on the importance of knowing what role to play in a given situation, and how to
leverage the role to overcome doubt and nervousness. He was deeply private and
held on to stories of his past so tightly we had no idea they were there. He
shared many of them with us in recent years. If you thought he was special, or
amazing, then you might want to at least double that. And double it again.
extraordinary life is what it is because of his guidance and inspiration. It’s
not the type of inspiration that seeks the name brand, the pinnacle of place,
but instead it is an inspiration to be where the work needs to be done. I hope
what I have done in life impressed him, and that he found it worthwhile.
That was the
standard I strove for, the standard for which I expect many of you strove.
In one of
his last emails, Dad quoted Dylan Thomas, and since the two of us discussed
this poem a year or so ago, I read it to you now because he fought and raged
against this day, until he knew it was time to fight no more.
Massa was a man of immense dignity. If you knew nothing else about him, you
knew this. He held on to his dignity every way he could in his last days and
hours. Long past the point where I think most people would have traded dignity
for comfort and ease. Not my father. He may have wanted to go gently into the
good night to escape the pain, but not if it meant giving up his dignity.
Do not go
gentle into that good night
Do not go
gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who
caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my
father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Massa taught us to be storytellers. Stories are a vehicle for sharing light in good
times and bad. Stories tell our histories, as families, as communities, as a
nation. Stories help us tell difficult truths that others can better understand.
More than anything else, stories are a way to share our values, our passions.
So please, rage, rage against the dying of the light by sharing stories of Dad,
let others know who and what he stood for, where and when he did it, and how he
did it. But most of all, why he did it, for passion.
Two years ago at Christmas, my father and I said goodbye. Neither of us expected that he would make this long with kidney failure and an aortic aneurysm. He did though. And since then, whenever we’ve talked or seen each other, we never assumed there would be a next time. It looks though that I will be giving (and posting) his eulogy very soon. I finished last weekend and shared it with him, half expecting a revise and resubmit. Instead he expressed appreciation and thanks.
But now that the end seems very near, there is more to say.
This is the way it was when Mom died in 2007. We never said goodbye in the formal manner that Dad and I used. Instead, I built her casket as an act of love, in keeping with her desire for something simple and frugal. There was still more to say, even though I tried to say it all the building.
As Dad fades away, I can’t help but think of Walt Whitman’s poem, “O Captain! My Captain!” –
O Captain! my Captain! our fearful trip is done, The ship has weather’d every rack, the prize we sought is won, The port is near, the bells I hear, the people all exulting, While follow eyes the steady keel, the vessel grim and daring; But O heart! heart! heart! O the bleeding drops of red, Where on the deck my Captain lies, Fallen cold and dead.
O Captain! my Captain! rise up and hear the bells; Rise up—for you the flag is flung—for you the bugle trills, For you bouquets and ribbon’d wreaths—for you the shores a-crowding, For you they call, the swaying mass, their eager faces turning; Here Captain! dear father! This arm beneath your head! It is some dream that on the deck, You’ve fallen cold and dead.
My Captain does not answer, his lips are pale and still, My father does not feel my arm, he has no pulse nor will, The ship is anchor’d safe and sound, its voyage closed and done, From fearful trip the victor ship comes in with object won; Exult O shores, and ring O bells! But I with mournful tread, Walk the deck my Captain lies, Fallen cold and dead.
Richard W. Massa has been one of key inspirations in my life, a guidepost. I don’t worry that I never measured up to him, or that I failed him in some way, because I know that both are true, but only in part. It is the nature of life to fail, to succeed, as it is rarely just one or the other for the entirety of one’s life. I know also that he leaves with some regret, regret for not doing quite enough. He set a high bar for himself. In truth, he need not have any regret. By all measures of value he had a successful and meaningful life, one that touched hundreds, more likely, thousands of students in positive ways as professor and mentor.
There is never enough time to say all that may be said. As my father passes, I will carry his memory and all that I learned from him, and tell his stories to any who will listen.
I keep thinking that something is missing in the national discussion about the wall.
If I were a big real estate developer, one with an imagination, I would not be wanting to build a freaking wall. It’s too simple, too unimaginative, and far too expensive for something that does not work and is too easily defeated by a ladder or tunnel.
Let’s think big.
A two thousand mile long wall does little but impede wildlife and take land from its owner.s It doesn’t do anything. It doesn’t generate income. So let’s build condos.
Better yet, let’s build a giant city, or a new state, two thousand miles long and a mile wide, with 25 levels of homes, businesses, and factories. Not only would this make the border safe from scary people with ladders, it would require much deeper and longer tunnels, making tunnels more impractical and rarer.
We could build this self-contained city to maximize space usage, minimize the need for personal transportation, using well-established principles for urban design. Using a population density range of 4,600 people per square mile (New York City) to 9,800 (Paris), this city could support nine to twenty million people.
The roof of the city could support high-speed monorails and solar panels, with an occasional heliport, for transportation. Perhaps even rooftop farms. Data infrastructure would be built in from the beginning ensuring broadband access for all. Water and waste infrastructure would be more easily managed – no digging.
By populating this “wall” with residents, we won’t need border guards. We turn it over to the tech bros who are all-in on mass surveillance systems and make surveillance a condition of residence. Chips, ID cards, tracking systems at every door. Further, dispense with cash, make all transactions electronic. Basically, we create a social structure with no room to hide. Privacy would exist only in your own cubic footage of space.
We could build this glorious, technological city, fill it full of people (who, quite naturally, will break all the rules designed into the system and remake the intended social structure into something else entirely) and then turn around and build another one, only three thousand miles long, up on the northern border.
And wouldn’t this be much more fun and useful than a wall? Promise affordable housing, equal opportunity, new jobs, and easy access to healthcare, schools, and shopping without needing a car, and millions of people would give you the support you need. Think of the jobs that will be created just to build the thing. It’s huge. Huge!
And it will keep the masses busy and distracted for years.
In just over two months from now, in February, 2019, I will be nine years post brain surgery. I mention this because I have a couple hundred pages of unedited, raw memoir about the recovery experience. In those pages is beginning of a discussion about the need to lose weight.
At the time of the surgery I weighed over 300 pounds. At the time, my weight meant little to me other than as a body image issue, or a clothing issue. Shoes wore out faster, clothes had to be larger and of more limited selection. Physical activities were often more limited, although I was generally doing everything I really wanted to do, including backpacking. Comfort was issue. Most chairs are still designed for an average body weight and size of 160 pounds.
Whatever the problems, they were really only mine.
While in neuroscience ICU I realized my weight did impact others. It had significant impacts on those taking care of me. This became clear to me in the comments of one night nurse who frequently complained about her back. This bothered me so much, that in the middle of one night when I fell trying to get off the bedside commode, I refused to ask for help. Despite the weakness, the wonky head, and all the tubes connected to my arms, nose, and head, I refused to call for help. Instead I struggled, slowly and painfully, back into the bed.
All of this was on my mind two years ago today when I started with a weight-loss clinic. It has been a successful relationship and program for me as I have lost 100 pounds. I have put a few pounds back after ending the active weight-loss phase and significantly increasing my strength training in the gym. I feel stronger and healthier than at any point prior. I know for a fact there are things I can do now that I could not do 35 years ago, like pull-ups and chin-ups. My weight is about 25 pounds less than it was when I left the Army in 1985, but despite being older and probably having less muscle mass, I am stronger. Probably because I am making more effort at being strong then I did then.
And today all this matters a great deal. My wife, Melinda, is temporarily wheelchair bound. A month ago she tore muscle or connective tissue in her hip. Instead of resting and healing, as she had been advised, she got a bit carried away preparing for the holidays and collecting gifts for our newly announced grandchild. This aggravated her injury. A road-trip to southwest Missouri for Thanksgiving aggravated her pain to the point that she could not get out of the car at a motel in Evansville, Indiana on the way home. We found our way to emergency room, spent 12 hours there getting her pain somewhat under control, and a wheelchair.
We slowly made our way home. Fortunately we had taken her car, which is significantly larger than mine, to accommodate her walker. Otherwise we would not have gotten a wheelchair in and out of the car.
We’ve been home a week now. Returning to a mode of existence that we lived a few years ago during her different surgeries. Only now, instead of intentionally trying to use her leg to encourage healing, it’s the exact opposite. She cannot stand at all without a great deal of assistance. So, it’s really important and fortunate that I am strong and healthy right now. It takes a lot of strength to help her, and a lot of effort to protect my back.
My point is not to shame anyone. Losing weight is hard. Extraordinarily hard. Keeping it off is harder still. But there is a reality that our weight does have impacts. One of those impacts is the ability of others to care for us. More to the point, it affects our ability to receive care. This matters. It may be long-term, it may only be the case if something bad happens, but it matters.
Being a caregiver is hard work. Some things are harder than others. If nothing else, a caregiver needs to be fit and strong. Strong enough to let the frequent cries of pain wash over them without interrupting their work. You’ve got to be strong….and so this is easier than it was four years ago.
I was home today because it was Veterans Day and I went up to the attic today to fetch our son’s rocking horse, Daylight.
Daylight is 26 years old and shows his age. His mane is half gone, his tail completely gone. His foot pegs are dog-chewed on the ends. He needs badly to be curried and Spruced-up a bit (despite being Yellow Pine) because in June he will be pressed into service for a second generation.
While in the attic and sorting through a few boxes (a tribute to my ADHD) I ran across the folders with my collection of diplomas and awards from my time in the Army. I thought about tweeting photographs of some as an acknowledgement of my time in service….until I realized that all but two of had my name and Social Security Number.
And then I started to about all the officers and NCOs I knew with such certificates, diplomas, and awards, framed and proudly displayed on their “I Love Me Wall.”
In the 1980s our use of the SSN was downright casual. In the Army, we used them for everything. When I was the company NBC (nuclear, biological, chemical warfare defense) NCO for the company, I knew most of the guys’ SSNs by heart since they were printed on the assignment tags for each of the protective masks. The SSN was everywhere, except when we used roster numbers (basic training, air assault school, for example).
My dog tags had my name, religious preference, blood-type, and yes, my SSN. Of course, it was logical to use the SSN. It is of course, a federal number, and so why create and issue a new number to keep track of people in a federal organization? And this was likely at the core of thinking that every other organization started relying on use of the SSN. If someone has already issued an ID number to an individual, and that ID has some assurances of being uniquely assigned, and has the imprimatur of the federal government, why use anything else?
I guess it is a good thing that identity fraud was much less a problem when I was young. Or at least a different kind of problem. It was easy enough to fake an identity just by saying you were someone else and it surprisingly easy to get valid a copy of someone else’s birth certificate. It’s much harder now. It’s almost impossible, even as a grandparent to get a grandchild’s birth certificate without a half-dozen signatures.
On the other hand, it really hasn’t been all the long since the Commonwealth banned printing SSNs on envelopes, or IDs. Without looking it up, it seems like it has only been about 15 years. The thing is really this. We just now starting to figure out privacy, its protection, how data connect to an individual, and how an individual connects to the data-oriented world. While we are doing this, while we are trying to protect our ID numbers of various and sundry issuances, there are scores or hundreds of data scientists working out ways to connect us to our data without those ID numbers.
I’m beginning to wonder if real privacy is little more than an illusion and a misplaced belief that we actually know the organizations that know who we are.
I hadn’t realized it had been six weeks since I last wrote anything. Huh.
I’ve been busy.
First, we saw Lady Gaga and Bradley Cooper in “A Star is Born.” That was the movie that Streisand and Kristofferson should have made. Not only was it incredibly watchable, it was much more believable. There were so many times while watching I thought they were just throwing shade at that unwatchable movie, implicitly saying, “See? You could have done this.”
So, all the busy-ness? I have been pushing through design and development work of a new website, along with building a complete content management system to support it. Often my best work (because of fewer interruptions) occurs late evenings and on into the night. There have also been pieces of this effort that were embedded and now part of the current live site of which I am particularly proud, with some additional modifications underway. Another month or two to finish this off completely.
I have been working to balance the need/desire to do this work with regular self-care routines – I’m almost terrified at the prospect of going back to way my life (and weight) was. To do this, some things have fallen off, like writing, others have shifted around. Life has otherwise stayed much the same, while still managing to increase the intensity of my weight-training significantly.
Life is good.
At the end of September I was in Little Rock, Arkansas as part of a panel discussion on statewide longitudinal data systems, sharing our experiences in Virginia. I’ve been meaning to write up my thoughts from that day, but haven’t taken the time yet to do so. So I will note the primary theme here as nudge to give it a fuller treatment.
“What most Chief Data Officers and Data Governance people get wrong is this. Control. They make the mistake time and time again that Data Governance is all about control. Controlling access. Controlling definition. Controlling use.
This is wrong because control is very often an illusion, especially when it comes to data. No matter what agreements you enjoin and sign, at some point you give up anything resembling control and can only hope and/or trust that the other party (parties) live up to their side of the agreement.
In the end, I don’t think this is sustainable. I’m not suggesting the contracts, agreements, MOUs should disappear, because they can’t – they meet a legal need while defining a necessary framework for engagement. Instead I think data governance should focus on the single principle of ‘respect.’ We need to ensure that there is a culture of respect towards the data, towards its use, and most importantly, a constant respect for and of the people the data represent. Too often it seems folks talk about protecting privacy and confidentiality as compliance ritual instead of as a matter of respect. This has to change if we are going to have meaningful data governance and meaningful protections of individuals with a use of data that drives positive change and saely gives voice to those at the margins or those without a voice.”