Data, Caregiving, and the Ethical Control

This was in response to the tweet pushing Fascism and the Caregiver.

It makes sense, doesn’t it? Those of us with the responsibility of managing large quantities of the personal data of other people constantly think about control. We have legal and ethical requirements to control access, to establish and maintain limits, and use best practices (such least privilege access).  Whether we are talking about the Federal Education Rights and Privacy Act (FERPA),  Health Insurance Portability and Accountability Act (HIPAA), or any of the dozens of other federal and state privacy laws.

We also have the responsibility to encourage use of the data, but always appropriate use. Use that adds value to the lives/livelihoods of those we serve. Above all, use that does no harm, intentional or otherwise, to those whose data it is.

Last week, there was an essay at InsideHigherEd with the statement that “Big Data are ethically neutral.”

Data are never ethically neutral.  How can they be? Data create a definitional representation of the world and actions of individuals. The simple act of definition is fraught with ethical dilemma. I’ve written before about our decision not to collect student sex beyond men, women, unknown/unreported. There needs to be legitimate reason to go beyond this level of detail that outweighs the risk of collecting information about individuals that can be put to nefarious use.

As I write this  on the weekend of a badly written, ill-advised executive order, I know that a number of my colleagues around the state and nation are rethinking data collection elements, especially those about religion or nation of origin. There is an ethical choice about what to collect. For what reason would it be necessary to collect religious preference? I fully understand why the military does so as there are at least three reasons: 1) providing adequate numbers of chaplains with knowledge and training across faiths and denominations; 2) knowing the last rites needed by each service member; 3) knowing what symbols to use on a tombstone. These seem clear-cut to me. However, I can rarely understand why any other government agency or private business would need to collect this. More and more, I understand even less why someone would provide it. The fact is, today’s majority group is no more than tomorrow’s minority group.

There are also ethical choices at work in creating data definitions, specifically in the coding of categorical data or the scale of numeric data. Any choice of categories, any choice of words to describe the category,  have the power to determine how people think about the data, from collection through reporting. A simple example is the tired phrase “first-time freshman” which we (at work) have replaced with “First-Time in College” and “Freshman” with “First-year.” It’s long past time to move away from gendered terms. After all, our flagship university has been enrolling women since 1972.  (When pundits start talking about “colleges and universities being resistant to change” I start pointing out all the ways they have changed in just the last 50-odd years. It’s quite amazing.)

I have control issues, so let’s get back to talking about control.

I’m suspicious of anyone that tells me they are controlling me or my behavior for my own good. It is is usually for their good. On the other hand, one of the maxims I always taught my sons was , “Rules are your friends. If you’re going to break them, make sure you know what rules you are breaking, and why.” Anyhow, there are rules that make sense. Rules for public safety and responsible living within the social compact. Control, in and of itself, is not a bad thing. Controlling access to data as a privacy protection is not only reasonable and proper, it is an ethical and legal obligation.

But if data are locked away, without use, they should never been collected in the first place. There should be use. If data are collected to serve a purpose, let them serve that purpose. If they can be used to serve a greater purpose, that should be allowed as well…with proper controls. The hacker creed is that “Data want to be free.” Perhaps, but they at least want to be more free.

In other words, it is about balance. This is the mistake I made as my wife’s caregiver – I tried to exert too much control, for her own good, of course. And mine, it was just easier that way.

“Easier that way” should probably never be the justification for anything.

Fascism and the Caregiver

For a variety of reasons I’ve been thinking about control lately. One of the things I have learned from reviewing my role as a caregiver is the development of a tendency towards seeking greater and greater control. This occurs with the best of intentions, the well-being of my patient, but the comfort found in control is seductive. There never seems to be quite enough control to be truly comfortable.

For example. After my wife’s first foot surgery, which ultimately failed, she had a number of accidents while getting about in the  alleged care of others. She suffered not one, but two concussions, because of accidents with her knee scooter. Through recovery from her second foot reconstruction, for which she had to remain non-weightbearing on her right leg for 12 straight weeks, her left knee became less and less stable with an almost complete loss of cartilage. This led to the first knee replacement. And then the second. And then more than a year to complete her recovery. (Unfortunately, she still faces more surgeries as a result of her connective tissue disease.)

The natural response of a caregiver in this situation is to reduce risk. The easiest way to do this is to exert control. This is despite the fact that control is an illusion most of the time.

First, we start to identify the problem areas of potential injury. The easiest of these is space. We change the space as best we can. We did much of this through making the house universally accessible on the main floor, adding a stairlift, and widening doors upstairs. We also moved away from the temporary ramp we had built to a significant expanse dominating the front yard meeting the letter and full spirit of ADA guidelines.

Outside the home, we changed cars. Moved from two small SUVs too a much larger one for ease of access and the hauling of wheelchairs or rollerators of various types. I became her sole escort. Paying attention to path, guiding her, removing much of her decision-making. Slowing her down to control her speed, especially on descents.

All of this was appropriate. I would do the same things over again, but I would think about it differently. I would be cognizant of the control I was exerting, that I was trying to exert.

The problem is really that control is seductive. It makes your life easier to the point of saying, “No, let me do that for you,” as a form of control to avoid mess, frustration, or discomfort for the patient and yourself. For a long-term caregiver this is incredibly seductive. Especially if chronic pain and emotional outbursts are part of the situation. After a few months, or a year, it becomes easy to do anything just for the peace and quiet. One begins to exert control in unhealthy ways in order to control your own environment – to try and find an elusive peace and quiet.

Yeah, yeah, for those paying attention, this leads to a nasty codependent relationship. Which can be quite horrid. Because what happens, if the caregiver is effective in making life easier and minimizing pain and discomfort, the patient comes to really desire this. After all, that person is miserable to begin with and so this can deteriorate surprisingly quickly – without any real awareness that this is happening. The patient ends up wanting to be controlled, consenting to it, and this is bad for both parties. Ideally, the patient should always rebel against control, never consent easily. Healing will be quicker the more the patient does for themself.

In the end, it is all about control. Humans seem to naturally seek control over the environment and over each other. Always forgetting though that control is illusion. The climate can’t be controlled, there will always be a stronger storm. Far too many things are beyond our obvious control, but we act otherwise.

A few months ago, a retired physician euthanized his wife and then shot himself. She had terminal cancer, was nearing death, and he had been her sole caregiver for almost five years. This was just up the road from us. From all accounts he had given up hope after trying to do it all himself. Probably trying to control an uncontrollable situation.

When my wife and I talked about this, my response was, “Don’t worry. I would never do this. I would still want to play golf.”

This was not as reassuring a response as I thought it might be.

But see, behind it, there was a list. A list of all the things that need to be done to by the caregiver, to maintain control. Way down at the bottom of list, almost always at the bottom, are the self-care items. This is because the time it takes  to be a caregiver can easily drive out the time needed for self-care. Especially for hard-headed, counterdependent caregivers (like me). You strive to be super-competent at everything. And there is always something else to add to the list.

And this reminds me of a fight, way back in college, before marriage. (I think this the best line ever thrown at me during a fight or argument.)

“Goddammit, all you ever want to do is paint, eat, and fuck!”

“No, I want to read, too.”

See, it’s the list thing. There is always something to add to the list.

Learning to give up the act of seeking and exerting control as a caregiver is scary but it leads to healing. As my wife’s physical condition has improved, as she has been able to reduce the meds and is no longer on morphine, the inconvenience of using a ride service has become too much to bear. She wants to drive again. She wants her independence.

I was initially resistant. She does not have a good driving history. In one 10-day period, she damaged four cars in three events. The cost of insurance was nightmarish. And I have my own control issues. But. It is time. She’s an adult, with agency, and I want her to be fully and completely independent of me. I want to give up the role of caregiver. So instead of joining the women’s march on Saturday, we spent the morning at the DMV where she regained her independence and I gave up any control over where she is, where she goes.

It’s a good thing. It’s liberating. For both of us.

The fact remains, seeking control is seductive. Especially for those who desire power or desire sameness or the comfort of a well-ordered state. It is in our best to interests to rebel against being controlled, especially when it is for own good. We do not have to consent to be helpless, to be controlled. We can, and should, fight for our health. We can help others to fight for theirs.

 

 

 

 

We Shall Overcome Redux

 

I’ve mentioned this a couple of times before, but I am not satisfied I made my point.

“We shall overcome” is a love song masquerading as a protest song. Of course, it is a protest song. But it has origins before that as a hymn, or two, or perhaps more than two. While it is a protest song, it is pretty imprecise as a protest song. What exactly is it a protest against? Nothing, really. It is an anthem of unity to bring protesters together.

“We” as in “all of us gathered” and not the royal “We.” But those of us here, together, right now. We shall overcome.

But it is clearly not a love song as most people think of a love song. It certainly does seem to reflect any of the seven steps in writing a love song as described in this wikiHow article. When I hear this song, or when I sing it, I feel an act of defiance against the universe in the name of love. Whatever happens, I will stand by your side and we will overcome whatever we face.

Take a traditional wedding vow:

“To have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness or in health, to love and to cherish ’till death do us part. And hereto I pledge you my faithfulness.”

Is this any different than saying “we shall overcome”?

Regardless of the difficulties we face – health, loss, challenge, and poverty – we shall overcome these things to love one another, to each meet the needs of the other.

It really sounds like a love song to me. The first stanza sets the stage – we shall overcome.

We shall overcome,
We shall overcome,
We shall overcome, some day.
Oh, deep in my heart,
I do believe
We shall overcome, some day.
Where we go, we go together. We are one.
We’ll walk hand in hand,
We’ll walk hand in hand,
We’ll walk hand in hand, some day.
Oh, deep in my heart,
I do believe
We shall overcome, some day.
We will live in peace, together. The absent word “together” (implied by the “we”) tells us all we need to know – we are going to make our life together, and it will be one of peace.
We shall live in peace,
We shall live in peace,
We shall live in peace, some day.
Oh, deep in my heart,
I do believe
We shall overcome, some day.
Whatever happens, we face it together and we are not afraid to do so.
We are not afraid,
We are not afraid,
We are not afraid, TODAY
Oh, deep in my heart,
I do believe
We shall overcome, some day.
Our love is in the world, and for the world. Together.
The whole wide world around
The whole wide world around
The whole wide world around some day
Oh, deep in my heart,
I do believe
We shall overcome, some day.
It is not just a love song between two people. It is just as easily something bigger. A love song for a community. A love song to the world. I will stand in defiance on behalf the world as an act of love. Because love is action every bit as much, and more, as hope is action.
There are probably billions of definitions and examples of what love is. Every day people enact love in small ways and big ways. For me, love is hope – action as an act of defiance. Defiance of a universe that barely acknowledges your existence. Defiance of loneliness. Defiance of all the things that prevent unity. Defiance of all things that cause sorrow.
“We shall overcome” is a statement of defiance, but all the rest of words are commitments of love as defiance.
We stand in defiance and we shall overcome, we stand united against all who would tear us apart. We two. We three. We, the many. We stand in defiance and love, and we shall overcome.

The Joads and the New Machine 

I saw this tweet.

Of course I liked it and retweeted out immediately as it is in direct opposition of Woody Guthrie’s guitar:

and Pete Seeger’s banjo – “This machine surrounds hate and forces it to surrender.”

And later I saw this story in InsideHigherEd regarding the removal of a Leonard Peltier statue at (un)American University. I’d like to say I am always amazed at how quickly colleges and universities cave into pressure to take down works of art, but I’m not. Not ever. The balancing act of keeping stakeholders (donors, legislators, students, faculty, and staff – in that order). It’s a shame though, since art should often challenge us, as well as comfort us. Art is not just decoration.

When Garrison Keillor was feuding with Minnesota Governor, Jesse “The Body” Ventura, I remember him making the comment that artists and satirists always have the last word. Art does live on. It leaves traces that are readily found within every culture. The art of satire can be bitingly painful for the target. Which is why authoritarian types try to shut it down. The criticism offends their sensibilities. Mainly though, it offends their sense of power. It’s hard to feel omnipotent if people aren’t afraid to make fun of you.

This is why funding for the National Endowment for the Humanities and the National Endowment for the Arts is at risk. The budgetary impact is miniscule, but conservatives have been after these programs for years. Sometimes art can be offensive – both because it violates your senses or it makes you break through habits/barriers of thought. It’s ultimate sin is when it does both. Or when it mocks, satirizes, and parodies.

Art has the ability to unify, to create community. Some art forms are shared experiences, such as theater. Concerts and music shows are the same. Wherever a group of people come together for entertainment and art. Music is special, though, in it’s simple ability to create community.

Rise Up Singing is a song book used in community singalongs. It contains hundreds of folk songs, popular songs, children’s songs, protest songs, and work songs. All of which are easy to sing. More importantly, these songs are easy to sing together to build community. And despite the marvelous work that people like Laura Gogia (@GoogleGuacamole) are doing in #ConnectedLearning, there is still little as powerful as people in the same physical space, with voices raised in song, if you listen, you can hear the people sing. Perhaps Laura and her friends could make a #ConnectedSingaLong?

Remember the scene in “Casablanca”   where Victor Laszlo leads the patrons of the cafe in La Marseilles? The power of shutting down one song with another. Of course, such resistance is frowned upon. And yes, resistance can have its price. So does compliance. I don’t want to live in a world where compliance is celebrated over freedom. I guess those who want could all get together and be Comfortably Numb.

As for me, I’ll take my hoarse and coughy voice and sing. Starting with Your Flag Decal Won’t Get You Into Heaven and ending with The Ghost of Tom Joad with about a thousand songs in between. With all due respect, singing and singing loud is not going to end the war, at least not by itself. But it’s a start. Any form of resistance is a start. Not rolling over, refusing to normalize the abnormal, these are the beginnings of resistance.

Ya’ wanna sing with me?

Do you hear the people sing?
Singing the songs of angry men?
It is the music of the people
Who will not be slaves again!
When the beating of your heart
Echoes the beating of the drums
There is a life about to start
When tomorrow comes!

–Les Miserables, “Do you Hear The People Sing?”

But wait. This is not the right song. “Do you hear the people sing?” is right, but “singing the songs of angry men” is definitely not right. It’s the angry men that got elected, by many angry men that feel they got left behind. So, we need new voices, new songs.

A different gender.

A little bit obvious would be “Let It Go” from Frozen.

Let it go, let it go
Can’t hold it back anymore
Let it go, let it go
Turn away and slam the door
I don’t care
what they’re going to say
Let the storm rage on.
The cold never bothered me anyway
But my muse suggested something different. I’m not sure how it works as a marching song, but I suspect some talented people can figure it out. Let’s get Beyonce to lead us in Formation.
It’s a new world. A new style of protest and new voices are needed.

Tiny Acts of Defiance, and Hope

As a preteen, I grew up with an alcoholic stepfather. When he stopped drinking through AA, his meeting life life morphed into ours with Al-Anon and Alateen meetings. The one day-at-a-time message was pretty well hammered into me. Of course, at the same time, the TV show “One Day at a Time” was running and I had a major crush on Valerie Bertinelli. So, one day at a time became a lifestyle. (Which later became one datum at a time.) There were times in life when one day at a time was not strong enough and I had to just focus on just hour at a time.

As a follow-up to last night’s post on Hope, I want to say something about the little acts of defiance that can create hope.

Hope is action. Hope begins with defiance. Once you begin to defy that which threatens you or darkens your life, you can begin to find hope.

Start by getting up each day. The desire to hide in bed, to feel you can’t face the day, can be incredibly strong and seductive. Sitting up, putting your feet on the floor, and standing (or moving to your assistive device, defiance applies to everyone) can be the bravest act of defiance one can make.

Know what you believe in. Search, talk to people, learn, for God’s sake, read! So much has been written about freedom, courage, and hope, there is no reason not to be able find inspiration. Literature, music, performance arts, and fine arts can all inspire defiance and hope.

Push against the wind. Step sideways into it. Move into shelter. Or just stand against the wind and be a shelter for others. Just help someone.

‘Twas in another lifetime, one of toil and blood
When blackness was a virtue the road was full of mud
I came in from the wilderness, a creature void of form
Come in, she said
I’ll give ya shelter from the storm
And if I pass this way again, you can rest assured
I’ll always do my best for her, on that I give my word
In a world of steel-eyed death, and men who are fighting to be warm
Come in, she said
I’ll give ya shelter from the storm

-Bob Dylan, “Shelter from the Storm”

Do acts of sabotage. Toss your shoe into the machine. Do work that causes others to question what they think they know. Most of us have a greater ability to change the world than we realize. One small act of kindness, one small act of defiance, can set an avalanche of change in motion.

Save a book, or many. Save recordings and scripts. Ensure that the art of defiance and songs of freedom are always available.

Don’t be silent about injustice. More importantly, learn to recognize it. Once we begin to see injustice, we will get to the point where we can no longer be silent. It’s the ability to turn our heads, to ignore injustice, that permits silence. I once read an article on relationships that advised men to “learn to see the coffee cup.” In other words, clean up your own mess or just generally, by seeing what needs to be done and doing it. It’s a great start to saving a marriage for both parties. Or a country.

Be your own hero. Recognize that when you get up and do what needs to be done for the good, you are a hero. You are modeling for others the behavior we all need. You are letting others know that they are not alone.

You are my hero when you do these things.

Through the mad mystic hammering of the wild ripping hail
The sky cracked its poems in naked wonder
That the clinging of the church bells blew far into the breeze
Leaving only bells of lightning and its thunder
Striking for the gentle, striking for the kind
Striking for the guardians and protectors of the mind
An’ the poet and the painter far behind his rightful time
An’ we gazed upon the chimes of freedom flashing

-Bob Dylan, “Chimes of Freedom”