As many people know from what I have written, I have cystic fibrosis and type 1 cystic fibrosis related diabetes. While something like this can give you a unique perspective on life, it can also fool you into thinking that insights that are totally natural to you will also be natural to others.
This piece tries to explain why I roll my eyes every time I hear a phrase that other people seem to think is a conclusive fact of an argument. The other part tries to explain a better way to approach it. How many times have you heard:
“It’s not a crime. It’s a disease” or “It’s not a sin or a bad thing. It’s just who I am.” or “I didn’t choose this. I was born this way.” or “This isn’t under my control. It’s a systemic problem.”
These are the things that I hear constantly. And they have absolutely no persuasive power to me, even though I recognize they have enormous persuasive power to others.
I am writing this not to ridicule the individuals who say these things, but to explain what they miss, what they lack, and why they are unhelpful. Then, I want to put forward a slightly more complex, but still rather nuanced view, that allows for actual compromise, discovery, thought, and discussion. In doing so, maybe I can get a little bit of understanding from people who just seem to skip over situations like mine and instead move to someone more usefully connected to a planned campaign to change public policy.
The Ubiquity of “It’s Not a Choice.”
It is amazing how much I see some version of this argument. And sometimes, only one aspect of the crime/disease, bad/identity, choice/inheritance, individual/system question is explored. But it’s everywhere. You don’t have to look far. This is how people make decisions.
For some examples of how people think, here are two paragraphs, including many links: Obesity is a disease, and not a choice. Poverty may not be a disease, but it is certainly not a result of failed personal choices, and instead, it is a “structural” thing about society. Unemployment is also often structural, and therefore permanent. The idea that alcoholism is a disease has gotten some push-back, but it is there. But that push-back applies only for alcoholism, because obviously, addiction is a disease, not a choice, and it would certainly be bad to treat addiction as a crime. Depression is also a thing that would is terrible to treat as a choice.
The biggest taboo on this subject is sexual orientation and gender identity, where, “Since 1975, the American Psychological Association has called on psychologists to take the lead in removing the stigma of mental illness that has long been associated with lesbian, gay and bisexual orientations.” Being gay certainly isn’t a choice, and it certainly isn’t a disease. There’s still a good question as to whether it’s genetic! But regardless, it’s just the way people are. And it’s the same with being trans. And we certainly can’t keep people out of the military, with “Don’t Ask Don’t Tell” for instance, just because of the way they are and were born.
My Disconnect with “It’s Not a Choice.”
That last one was always the one that struck me the most. I can’t join the military because of the way I actually and and the way I was actually born. If I tried to join by just leaving out the genetic and un-chosen detail of cystic fibrosis out (like this BAMF did), I could risk a dishonorable discharge.
I always hate this dichotomy of choice and disease, because those who “prove” (and yes, I’m going to put that in no-I-don’t-accept-your-conclusion-quotes) that their [whatever] is not a choice but “the way they were born” seem to get freedom or options that I am not offered, even though it is unquestionable that my cystic fibrosis and diabetes is not a choice. (I was born with one and it is explicitly genetic, I developed the other around age 15).
The most personal example of this was when I was struggling for a job after law school. I had been looking for over a year. I really, REALLY needed a job. I had sent out around 150 applications, and this was only about the second I had gotten. As I came into the small law office, I started counting employees, because I knew that the Americans with Disabilities Act at section 12111(5) and their mandate of “reasonable accommodations” at section 12111(9) for people with conditions like me only kicked in at 15. By the time I interviewed a lead associate and sat down with the owner, I had already spoken with others over the course of about an hour, but I had only counted 10 workers. I then had a very fruitful conversation with the owner about how I would grow, how I would learn as an associate, and how criminal defense always demanded creativity and pizzazz. But with “10” ringing in my mind I then, after about 20 hours total in the firm, declared that I had certain health issues, and shared that difficulties could arise which would require some occasional flexibility regarding work. I was wondering if I would get some sympathy, because the owner also obviously had a disability. But the smiles moved to looks of concern and several pointed questions that are impossible to answer, like “Exactly how often do you get sick?”
Then, in the middle of these questions, an associate came in and presented an issue to the owner, and I was shown the door with a very brief and seemingly dismissive, “We’ll get back to you soon.” I went back to my car and sobbed, because I knew they wouldn’t be calling back. And I still couldn’t get a job.
They didn’t call back, not even to explain a decision. And the worst part is, when I tell this story, I never get a “They can’t do that to you! That’s not a choice! That’s literally a disease! They can’t discriminate against you because of who you are!” Instead I get, “Man, that’s tough. Having a disease definitely has those challenges.”
And that’s not the only thing out there. Personally, I would have loved to join the military. I got one call from a recruiter when I graduated high school, and upon telling him I had cystic fibrosis, he never called again. I know I will never have a whole host of jobs. It’s not that I’m mad that people won’t let me have a job I want because of who I am. Rather, I simply know I will never have a job because of who I am.
“You can’t discriminate based on who someone is!” Oh yes you can. Not only employers like above, but also, I worked as a waiter in college until I learned that the light smokiness that drifted from the smoking section was constantly making me ill. I discriminated against myself, because of who I am.
“We need to remove the stigma of disease!” But you can’t. That’s why it’s called a “disease.” No one would choose “disease” over healthy. The stigma is not socially constructed. The stigma is inherent. It either is a disease, or it isn’t.
“This is a structural problem!” Yes. The structural problem of the 40 hour work-week is definitely socially constructed. We could work 30 hour weeks, or 80. But can I reasonably demand that the entire structure of a society, formed by the average desires and judgments of reasonableness of millions of my peers and forerunners should be destroyed for me? Not at all. So I don’t try, and I’m confused by those who do try.
“This is just who I am!” Have you ever had to wake up and fight who you are every single day, multiple times a day? I do. Most people’s default when they sit around and do nothing is to be healthy. My default is a long, slow decline to sickness. I know what I am, and what I am is killing me. People seem to think “bad thing” and “who I am” are mutually exclusive categories. I know from experience that they are certainly not.
It Certainly Is a Choice. And a Disease.
In my experience, these dichotomies of crime/disease, bad/identity, choice/inheritance, and individual/system are not dichotomies at all. They are simply different ways of tackling a problem or explaining a situation. Unfortunately, when we treat them as mutually exclusive, we help no one; we confuse rather than enlighten.
For example, one of the worst problems I have with my diabetes is controlling my blood sugar. My blood sugar is especially difficult to control because the ideal diet for someone with diabetes is a healthy, low-carb (all carbs turn to sugar) diet. Meanwhile, the ideal diet for someone with cystic fibrosis is a high-fat, high sodium, and high-calorie diet. While these two diets are technically not contradictory, in practice (and in grocery stores), they are extremely difficult to marry. Questions like “Why did my blood sugar go crazy last night, causing me to wake up around 3:00AM and vomit, and be in a hazy stupor with a chest full of mucus this morning?” are usually answered with something like “because you ate an entire box of golden raisins last night, and didn’t even accurately estimate how many you ate when giving yourself insulin.” Oh. Yeah.
So if my boss is upset that I showed up to work late, what do I tell him? Is that a sick day, or a “Caleb was dumb last night” day? Is that extra hour or two that it takes me to get to work like a cold or like a hangover?
Is that event a disease? Yes. Two in fact. But was it also a choices? Yes. Why did I buy the raisins? Because I was going to make a healthy salad with kale and almonds and other super healthy stuff (Good choice). Why did you eat the entire box of raisins? Because I ate the entire pack of almonds the night before (choice), so I couldn’t make the salad, and I was hungry (not a choice), and kale tastes nasty (tautology), and I was hungry (not a choice) and because golden raisins taste amazing, and I just didn’t want to stop until the whole box was gone (definitely a choice). This was a real even in the last week, by the way.
To pretend that I don’t have a choice in that transaction is incorrect. To ignore the reality of the disease at its effects is also incorrect. The disease is the choice. The choices are the disease. Apart from a mere scientific and passive identification, how can you separate disease from choices or choices from the disease in a living breathing human being?
A disease simply creates a long series of choices. These choices are often completely separate sets from those who are well, but not always. And every set will be very different based on what your disease is. Because while I do have cystic fibrosis and diabetes, I am also a human being with a mind, a heart, and with appetites, too. We are not objects. We are persons.
The existence of disease is not an excuse for a passive approach to its reality. Instead, it is a challenge to use your mind to understand what you are up against, to cut back on your appetites, whether the appetite is for food, sloth, rest, sex, pleasure, a buzz, or whatever, in the unique places that your mind shows will cause problems for you specifically. And to this end, you must use your heart — your passions, your courage, your will, your endurance, and your hope — to have the strength to do what your mind (and the minds of your friends, family, doctors, and others) tell you needs to be done in order to achieve what is good.
And this has influenced my view not only on diseases, but on ideas about “who you are,” too. Who you are, your emotions, your tics, your interests, you desires, your passions, your pride, your specific levels of rage, greed, and selfishness, will set a particular set of choices before you, which will be extremely different than those who surround you. Who you are may not be good. Use your mind, your moral fiber, and the help of others to find out what you should change about yourself.
The same could be said for a systematic problem. “This is a systematic problem.” Well, okay. What is the system? What does the system dictate my rational choices are? What actions should I take in light of those choices? Does it matter that someone else’s choices have much easier options than mine? What does it mean if the system gives me no options or choices? Should my demand be to destroy the system and rebuild it to my needs, or to request an exception to the system as it currently exists? Do I even understand the system that I am in?
Not All Choices and Diseases Have One Right Answer
My first break-through in talking to others with cystic fibrosis was when a group of mothers could not understand why their children would not choose to do their treatments, which make them healthy, and would instead waste time going out with friends, laying on the couch, or maybe even smoking or drinking. How can they do this when they know it is wrong?
Choices are never disconnected.
My answer was to merely try and explain that the choices are not that simple. Yes, being healthy is a good end to pursue. I don’t know a single person who would argue with that. And yes, the science and medical research is clear: twice-daily, or more if needed, breathing treatments that can take up to an hour each are greatly correlated to improved health outcomes over all CF populations. But that’s not how people make choices. And that’s not even the choice itself. Because, I told them, it is not true that if you do a treatment, you feel better. Sometimes you do a treatment and you feel terrible because of all the mucus and coughing you stir up. Sometimes you do treatments all the time, and still get a bacterial infection, so the work seems useless. Sometimes you don’t do treatments at all, but you can get by. Cystic fibrosis hurts, but treatments hurt, too (this link is long but worth your time).
It’s not a choice of health and no health. Because so many other things are connected to the treatment. Sometimes you don’t want to come home for a treatment. Because you don’t want health? No. Because you want friends. Sometimes you don’t do treatments or deliberately skip them. Why? Because you don’t want health? No. Because you want to show up on time and keep your job. Sometimes you have no-where to go and no planned event better to do, and you still want to sit down and do nothing. Why? Because you don’t want health? No. Because I just want some rest.
Have Compassion When Helping with a Choice
I am tired, and I would gladly accept a cough tomorrow for a friend, for a paycheck, or some rest today. That’s the real choice. That’s what I wanted to tell these CF parents. And that same complexity in different forms comes with treating all of these issues, not just issues of disease and health. It just as easily applies to all the false dichotomies: crime and disease; sin and “who I am”; choice and “born with this way”; and individual control and systemic issue. It is almost always possible to make a choice to gain something for one’s benefit. But we cant stop there, “For what shall it profit a man, if he shall gain the whole world, and lose his own soul?”
The work is not done when you figure out that a disease is also a choice. It is not the end of the discussion when you find that options to better outcomes are available. These are deep questions — questions of endurance and purpose, questions of struggle and rest, questions of strength and weakness, of what is fixed, what is not, and what we are willing to sacrifice to tear up the foundations and build something new through force of will.
Every single one of the issues that is connected to one of these false dichotomies is something that is connected to much, much more than just good or bad and helpful or not-helpful. Making a connection between the best course of action and a person’s actions is difficult. They will need a great deal of mental and emotional support to do it. Even the will to do something means nothing without the knowledge to make it happen. Even complete knowledge and ability to do something will mean nothing without a heart that feels it is worth it. So have compassion, and understand what is really at stake for them.
I hope that my way of understanding the connection between diseases and choices helps people understand what they are capable of. I also hope they can get with people who show them what really matters.
The Better Way.
Ever since I saw the movie Master and Commander in 2003, (as a direct consequence, I read many of the Patrick O’Brien novels) I have been fascinated with the beauty, boredom, danger, joy, and struggle of those who serve on sailing vessels. In that line, with that fascination, I also enjoy the picture here:
Your diseases, your systems, your inheritances, your identity that you believe and feel to be overpowering: Those are your winds. Those are your waves.
Your abilities, your will, your skill, your choice, your sins, your virtues, your strength, your weakness, your endurance and your surrender: These are the skiff. These are the man. These are the rudder and the sail.
There is no sail without the wind. There is no rudder without the waves. There is no seamanship without struggle and failure. There is no shore without sea.
Avoid the rocks. Learn the craft. Find the safe harbor. Do not give up. Billions of others have made the same journey in similar vessels as yours. Some were bigger some were smaller. But no one has had your winds, your waves, and your skiff. We can learn from others, and we can even tell them things that are objectively true about sailing on the sea. But we cannot say that our journey is how theirs should go. The harbor may be the same. The winds and waves are not. So help each other to get to harbor. Don’t just tell them how someone else did it.
You are not a collection of gears. You are not a consequence of fate. You have your choice and your fears. Don’t think that for choosing it’s too late. You have a will. You have a soul. Not all storms kill. Fear should not control. Be a woman. Be a man. Courage will outlast outlast. Guide your ship to harbor. And above all, hold fast.
Instead of an academic description of how we should address choice and disease questions. Instead, as you can probably already see, I got lyrical and wrote this poem, in reaction to the Enduring the Gale. I think it does a pretty good job of summing up how I feel.
The Skiff on the Sea
by J. Caleb Jones
He’s a man in a skiff on the sea.
He pulls on his sail; he is free
To let go and there surrender
To the waves and to the wind.
They could stop, and there overturn her;
Would men thereafter defend
That his choice was not his own?
That the wind and the waves overpowered.
Or could it on ground be shown,
That surrender makes him a coward?
Did the clouds and winds not enlarge,
To more than the grip of one man?
Such Seamanship then is our charge?
To foresee with omniscient plan?
Is he not alone in his vessel?
Do we feel the burn on his hands?
The same waves, again, will we wrestle?
Do you compare yourself to this man?
A mate and a friend is the cure.
To cure the disease of despair.
The rope, a seaman, can secure,
But a passenger is equally fair.
For Courage is built on Hope.
And Hope is the savior of Man.
No strength rests in hand or rope,
but in Mind and Heart of Man.
With Hope he will burn in his will
With Hope he will gain in his skill.
With hope, we cope, in our skiffs on the sea
With friends we know, that our hands are not free
Holding fast for our friends, burning ache for their love.
And gladly enduring the gales of our living.
We hold for our lives, for a life is for love.
And love comes from others and I am another’s.
And I am another’s;
I am another’s.
So I will endure.
I will endure.
For I am another’s
I am another’s.
I will endure,
For I am another’s.
Ring me a bell
Show me a light.
Lead me to Land
Swift comes the night.
But I will endure.
I will endure.
Join me, great loves.
I will endure.
So gain wisdom, gain skill, and choose rightly.
– – – – – – – – – – – – – – – – – – – – – – – -The End. – – – – – – – – – – – – – – – – – – – – – – – –
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