Breaking news: Soda not responsible for majority of Medicaid spending!

Let’s talk about taxing soda. Background here:

Reading online comments on this and other articles, Facebook, etc, I find it interesting that so many say things like, “I’m tired of my taxes going to fund Medicaid for people who gave themselves obesity and type 2 diabetes by drinking sugary drinks all day” (I’m paraphrasing multiple comments but it’s quite a literal paraphrase). Clearly, these proponents see taxing soda as a way to control behavior of people they perceive as a public burden. Even the ones that kind of recognize what they’re saying and sort of apologize for it still go ahead and say it. “We have to save those poor people from their bad choices. Not only are we helping them, but this way we won’t have to pay for their dialysis.”

I’ve also seen comments supporting a tax on unhealthy or “junk” foods in general, even on all packaged and processed foods. This all just reminds me too much of outraged comments about people using EBT/SNAP cards to buy chips or cookies. Confession: I buy frozen doughnuts at the grocery store. Sometimes I use SNAP. It’s my one indulgence, along with caffeine. Am I not allowed to have any indulgences because I’m lower income? Don’t get me started on the fact that my son will only eat processed foods due to his sensory issues. That’s a whole separate post.

I will leave it to other people to discuss how paternalistic and insulting this attitude is. I will leave it to others to discuss alternative ways of addressing unhealthy eating habits among low-income Americans (and Americans in general). What I want to discuss right now is the ludicrous image these people have of Medicaid.

There are four groups of people who receive Medicaid: children, non-disabled adults, disabled adults, and elderly adults. Average spending per person varies widely by group: In 2011 it was roughly $18,500 for adults who qualified due to disability, $17,500 for elderly, and $4,000 for non-disabled, non-elderly adults. Among children, those classified as medically complex (like my son, although he is definitely not the highest tier of medical complexity) account for 6% of enrollees but 40% of spending. In the Medicaid population as a whole, 5% of enrollees account for more than 50% of spending. This number has stayed pretty consistent in recent years.

But how can this be? you ask. It’s because elderly people requiring long-term care, and to an even greater extent people with multiple and profound disabilities, need much more services: diagnostic tests, home medical equipment, nursing care, etc. And there is a small subgroup – that 5% – whose needs are even more extensive (and expensive). These are the people with repeated heart surgeries, brain shunts, frequent inpatient stays, with trachs and ventilators and g-tubes, the ones who need 20 or more different medications, home health nursing, therapy, wheelchairs. These people’s needs are real and they are intense and they are not, I can absolutely assure you, the result of drinking too much soda. In fact, most of these individuals probably don’t ever drink soda due to problems with swallowing. It’s hard to thicken carbonated beverages with commercial thickeners, and there wouldn’t be much point in pouring them down a g-tube.

Folks, this is where your tax dollars are going. They’re going to people with developmental disabilities, to children with special health needs, to grandparents in nursing homes. A relatively small percentage of them is going to non-disabled low-income adults and children, and a relatively small percentage of that small percentage is being spent on problems that are the direct result of drinking soda.

However. If the reasoning behind the soda tax is that we are trying to offset Medicaid costs from people’s lifestyle choices, then logically, the revenue from the tax should go to Medicaid funding and not to preschool as in Philadelphia’s current proposal. I guess even the politicians behind the tax realize that would be just too transparent.





Charity culture

My last post was about so-called “entitlement culture.” Now I’m going to posit that the opposite of entitlement culture is charity culture.

In a charity culture, the only thing anyone is entitled to is whatever they already have. So if you have a lot of money and property, you are entitled not to have your money or property taken away from you (whether that’s in the form of taxes or squatters breaking into your unoccupied house). If you have privilege, you are entitled not to have your privilege decreased by other less privileged people being given equitable opportunities. If you have slaves, you are entitled to keep them enslaved.

Since no one deserves anything from you, this means that every time you give money to an organization or a homeless person, every time you hire someone with a disability, every time you free a slave, you are being magnanimous. Charity culture praises you. You get to feel good about yourself. However, it’s important that the recipient of your charity be appropriately humbled and grateful in order to maintain this image of your magnanimity.

For instance, on the show Downton Abbey, the Granthams and Crawleys are painted as the best aristocratic masters ever. They are constantly being generous towards their servants, and they know it. The “good” servants then feel very honored and grateful, while the “bad” servants (eg. Branson in the beginning and Daisy in later seasons) feel that what is being done is just and deserved, and that even more should be done to change the power balance. Sometimes the magnanimity is intrusive, as when [spoiler warning] Lady Mary insists that Mr. Carson and Mrs. Hughes be married in the great house although Mrs. Hughes wants to be married in their own territory. She doesn’t want her wedding to be a charity ball. The idea that a servant might prefer autonomy to her own lordly generosity is totally incomprehensible to Mary.

People who are in a position to be charitable feel threatened by the entitlement of those who are in a position to receive their charity. Their self-image is threatened. If the charity they give is actually deserved, then they are demoted from wonderful benefactor to, at best, a decent person. At worst, they find that they are not doing nearly enough or even that some of their charity is offensive. Ouch.

I imagine everyone who has any variety of privilege has experienced this at some point. I know I have. But since I’ve been on both sides of privilege, I’m able to put myself in the other person’s place, realize I’m in the wrong, and adjust my self-image accordingly.

Here’s an example from one of the homeless shelters where I used to volunteer. A couple came in wanting to stay together. The woman was pregnant, but since the couple was unmarried and the baby wasn’t born yet, they were told they would have to go to separate men’s and women’s shelters. They were extremely angry about this and said some very angry things. The workers who were present took the attitude of, “If you don’t want what we’re offering, go somewhere else.” Now, it’s true that these workers did not have the power to change the situation at that time, and they were frustrated and hurt by the couple’s hostility. But the attitude I believe they should have taken, and that I tried to take (not that it helped in the moment) was to tell the couple, “You’re right. This is unjust. I’m sorry and I will work to change this situation.” Ultimately, that hostility was not directed at us, it was directed at the larger system that was hurting them.

Let me be clear, this was a nice shelter, and these workers were dedicated individuals who really cared about what they were doing. Nonetheless, when you have the built-in power dynamics of giver/receiver, and you have an image of yourself as a caring person dedicated to helping others, and you are constrained by a variety of bureaucratic rules (whether or not they are in place for good reasons, whether or not you agree with them), negative responses from the people you’re serving are readily perceived as “ungrateful” or “entitled.” Many homeless people carry a lot of justified anger, and when they express that anger there is a tendency among shelter workers to dismiss it as “their problem” instead of acknowledging that there are some pretty real and serious reasons to be angry. It’s easier to dismiss one homeless individual as an asshole than to acknowledge that you’re part of a system that often harms the very people it’s trying to help.

In charity culture, being angry is a privilege. If you’re not privileged, if you are at the bottom of the social ladder, you are only allowed to be grateful for whatever the people above you are willing to give you. You are not allowed to be angry. You are not allowed to complain. You are not allowed to feel violated or demeaned by the conditions of the offered charity.

Charity culture says, “We don’t care that you have an allergy or diabetes. Eat what we give you and be grateful we gave you anything at all.”

Charity culture says, “We don’t care about your religious beliefs. Believe what we do, or you won’t get anything.”

Charity culture says, “Don’t complain that the elevator/accessible toilet is out of order. You should be grateful we were nice enough to give you accessible stuff in the first place.”

Charity culture says, “I/we/you are such a saint for taking care of/being friends with/staying married to that disabled/mentally unstable person.”

When you make the shift from a charity mindset to an entitlement mindset in regard to your own privilege, what happens is that you go from feeling like a wonderful helpful person who is doing so much good to feeling like you never do enough. You realize that the things you are able to do are the bare minimum of what should be done. It may be a less comfortable place to be, but it’s actually a more interesting place to be, because it opens the door to forming real relationships with people different from you. (It’s hard to have a real relationship with someone who is basically a means to your own do-goodism and accompanying warm fuzzies.) It opens the door to constructive criticism of yourself and of the systems you are part of, and this leads to social change on a much broader scale than what one person’s personal charity can accomplish.

Entitlement culture

During this past Lent, one of the pastors at my church made a comment about how we live increasingly in an “entitlement culture where everyone thinks they’re entitled to everything.” I’ve heard this before, but hearing it at church really bugged me. What does “entitlement culture” mean? And is it, as implied, a bad thing?

First of all, no specific examples of entitlement were offered, so I will be forced to venture my own examples. I’ll start with the fact that I’m an older millennial and my generation is supposed to be very entitled. This is true. We are so entitled that we think that going into crushing, possibly lifelong debt in order to get a college education and then being unable to find a job that pays above minimum wage or offers any benefits and so having to apply for government assistance to survive is actually pretty messed up. We are so entitled that we think we deserve things like healthcare, housing, and food. Not only that, we think our children are entitled to these things, too!

Who else is entitled in our society? Let’s see:

Women think they’re entitled to be paid the same as men for doing the same work.

BLM activists think they’re entitled not to be shot by police because they’re black.

The residents of Flint, Michigan think they’re entitled to water that doesn’t damage their children’s brains.

Disabled activists think they’re entitled to access their own homes, schools, buildings where they work, doctor’s offices, and public transportation.

Trans people think they’re entitled to use public restrooms that best match their gender.

People who work 40 to 80 hour weeks think they’re entitled to healthcare, housing, and food and that their children are, too … oh, we’re back to that again.

This is not an exhaustive list, but you get the point.

Don’t get me wrong; there are many things in our culture that I find deeply disturbing. But the examples of entitlement I have just given are, I think, not only good, but are grounded in a humanism that actually comes from Christianity. (For a detailed argument on this and an exploration of how liberal humanism became disconnected from sacramental theology, read Reinventing Liberal Theology by Theo Hobson.)

So let’s ask the question. In a country that has the resources to provide clean water to everyone, where food is routinely thrown away, where large houses are empty and many people own two or even three homes, where available jobs are being outsourced to other countries, and where a small segment of the population possesses such huge amounts of wealth that they have nothing better to do with it than buy politicians, do we have an obligation to provide clean water, food, housing, and jobs that pay enough for people to survive? Do we have an obligation to treat people with equal dignity regardless of their race, gender, income, or health/disability status? I think we do, and doesn’t that mean we are all entitled to those things?

Furthermore, when people in our society are educated, when people who want jobs have jobs, when people with disabilities are included and their talents are utilized, everyone benefits. We owe our democracy (such as it is) to the founding fathers’ entitlement. We abolished slavery because of the slaves’ entitlement. We gave women the vote because of women’s entitlement. Entitlement is a good thing.

Finally, although this is not a religious blog, I’d like to address the claim my pastor made in the same sermon, that “God doesn’t owe us anything”.

Entitlement involves two things: an assertion of personal dignity, and an admission of need. I brought my son into the world in a state of complete dependency. Do I have an obligation to feed him? Clothe him? Shelter him? Change his diaper? I think I do, and the government thinks I do, because if I don’t do those things the government will take away my child and give him to someone else who will provide for his needs. Some people would argue that I also have an obligation to love him. Love is harder for the state to regulate, but ultimately just as important for a child. Because of his inherent dignity as a human being, my son is entitled to have his physical and psychological needs met by someone, ideally by me and his father, but if not us, then by someone else. Can we really maintain that this is true of infants and parents, but not of a God who according to traditional theology enjoyed full freedom and agency when creating human beings?

It’s false humility, not to mention insulting to God, to say that if we were deliberately brought into being only to die of starvation and suffer eternally, that would be totally fine. Entitlement is not antithetical to humility. What is antithetical to humility is for a privileged person (and most of us are privileged in some respect or other) to dismiss a nonprivileged person as “entitled” whenever they complain or demand change. More on that in my next post.

If Aristotle wrote inspiration porn

I recently read a series of articles called “The boy behind the mask”, originally published in The Oregonian in 2000, about a boy with a vascular malformation on his face. (From what I can tell, it’s a combined capillary-venous-lymphatic malformation, although the author never actually gives us a name.) The author of the articles, Tom Hallman Jr., won various prizes including a Pulitzer. His book of the same title has five-star reviews from people who were moved and inspired by his account. One disability scholar, Beth Haller, has written a critical response to the articles (“Confusing disability and tragedy”) but even she calls them “poignant and gripping” and has a generally favorable view.

This makes me feel like a bad person for writing negatively about them, but I’m going to do it anyway. I don’t know what Sam Lightner and his family think about Hallman’s take on their lives. What follows is just my personal opinion.

It’s pretty clear that Hallman conceived an outline for the story that went something like “First, evoke pity. Then, evoke terror. Finally, uplift the audience.” He then has to make Sam’s experiences fit this outline however he can. First, we must pity Sam for his deformity. Then we must be terrified by his life-threatening surgery. Then we must feel that the surgery was a triumphant success and that Sam is an inspirational young hero for enduring it. Reality, of course, is far more subtle and complex than this.


If you believe Hallman, life with a vascular malformation is continuous misery, skulking in shadows even in one’s own home. (“Dim light is a refuge.”) He describes as gruesomely as he can the “huge mass of flesh” like “misshapen hamburger” that “warps” Sam’s face. Rather than help the audience feel comfortable with Sam’s appearance, he exploits it for his literary freak show:

“When strangers looked at Sam, they first fixated on the left side of his face, a swollen mass that looked like a pumpkin left in the fields after Halloween.”

A rotting jack-o-lantern? Really?

There is never any real explanation of what this type of malformation is or how it really looks and feels (I can assure you it is not like hamburger) or what daily life is like (other than isolated and miserable) or how many people are affected. To give scientific explanations or mundane descriptions would demystify it, which is the very opposite of what Hallman is trying to do.


Then comes the horror film description of Sam’s surgery:

“There is the sound of sizzling, as if grease has been dropped onto a grill. A plume of smoke rises from Sam’s face. But the bleeding continues. […] The side of the boy’s face oozes blood. Drops splatter the floor. A red stain spreads through the surgical drape as if someone had spilled a glass of wine on a white table cloth.”

While I have no doubt that the 13-hour surgery was intense, and ultimately traumatic for Sam, Hallman seems to be squeezing Sam’s face for every last drop of bloody pathos he can get.

Still, I’m glad that I read these articles. Now that I know that this kind of writing is what prize committees like, I am working on the article that will earn me my Pulitzer. Here’s an excerpt from “The girl behind the hemorrhage”:

“She staggers into the dark bathroom and gropes for the switch. Sudden light shows the girl’s face, contorted and pale, in the mirror. Blood spurts from her left nostril, soaking tissue after tissue, while dark droplets appear on the floor like the aftermath of a stabbing.”

Pretty intense stuff, eh? It really takes you inside the experience of a nosebleed.


After Sam’s surgery, peers come up and talk to him in the school line. The implication is that suddenly Sam has a better social life, but it’s clear enough that these peers were old friends who already liked and accepted Sam. Why were we not allowed to see positive aspects of Sam’s social life before the surgery? And are we really supposed to believe that now, everything will be smooth sailing? There is also a strong implication at the end that because of Sam’s surgery he is now confident enough to smile for the yearbook picture, but in the photo comparing his school ID cards, he is smiling in both pictures.

With headings like “The risks we take can tell us who we are,” Hallman suggests that Sam’s identity is found in his willingness to undertake a life-threatening surgery, largely in response to social pressures. Please note, I am not criticizing Sam Lightner’s choice to have surgery (that’s an incredibly complicated and personal choice), but I am criticizing Hallman for making this choice central to who Sam is. Hallman understands that a child risking his life in the hopes of normalizing his appearance is a big deal, but he isn’t ready to modify his own perspective or the perspectives of his readers to change the context in which Sam makes that decision.

He quotes the surgeon, Dr. Mulliken, as saying “Everyone should have the right to look human.” But it is the people around Sam, including the journalist writing his story, who are defining what “human” looks like. Sam’s family recognizes this, as when his father says, “‘It’s a little bit scary to risk everything because the world doesn’t accept his face,'” and, “‘To us, he’s just a kid with a big old head.'”

Hallman acknowledges the perspective of Sam’s family, but ultimately undermines it with his pity-terror-inspiration narrative.

Breaking out of the narrative

Doing some more research on Sam Lightner, I learned that shortly after his surgery, Sam had a stroke and fell into a coma for 2 1/2 months. The stroke was ultimately traced back to effects of the surgery:

“The venous drainage system in the brain would be affected by surgery that altered the blood flow in the malformation. When the plumbing in Sam’s head changed, the blood found a new route.”

(^From Hallman’s book Sam: The Boy Behind the Mask, p. 172. I have not read the whole book, by the way, so I don’t know if it’s more balanced than the articles.)

I also found that Sam now has a public Facebook profile. He appears to have a sense of dark humor about his life, with pictures of himself in T-shirts that say things like “Keeping Portland Weird Since 1985” and “Keep staring. I might do a trick.” He shares thoughts on Swedish health care, public college tuition, and the senate run of the neurosurgeon who saved his life. In one post, Sam says: “I’m 30 years old, I don’t really know how I made it this far in life but I did, so I really just want to smoke my marijuana and enjoy myself.”

Is this continuous with the inspirational arc of Hallman’s narrative? Are people with disabilities allowed to wear caustically funny T-shirts and smoke pot and enjoy themselves, or are they supposed to endure unremitting suffering so that able-bodied folks can alternately pity and be inspired by them?

Reality is, when you are living with any kind of disability, a sense of humor (often dark) goes a long way. Humor is not incompatible with pain or trauma but is one of the ways we cope with it. For this reason, I think that any literary treatment of disability that refuses to laugh with (not at) its disabled subject is going to lack perspective. “The boy behind the mask,” in my opinion, falls pretty heavily into that trap.

Internalizing stigma

I used to be much more open about having a psychiatric condition.

My mother has been on medication for as long as I can remember. Her psychiatrist was a household name throughout my childhood and adolescence. (Whether we viewed her as a benevolent or malevolent figure, the psychiatrist was there, like a relative one alternately loves and hates.) My father also went through a couple episodes of major depression and briefly took an antidepressant. They both talked openly about these things. So when I had my breakdown at 15, I did not have any sense that seeing a therapist and taking medication was something to be ashamed of.

I quickly learned differently. Even some of my friends, a group of misfits with problems of their own, reacted negatively. I also learned that some people in my own family, outside the immediate circle of my sister and parents, were not understanding.

One incident particularly sticks in my mind. I remarked to my favorite teacher that I was going to ask my therapist something, and I will never forget the look of shock that came over his face. Why it was so shocking to him, I still don’t understand. But I immediately internalized that look. I was duly ashamed of myself. How could I have been so stupid? How could I have thought that was OK to talk about? Why did I have so little understanding of social norms?

That was the day I learned not to mention psychotherapy unless the person I was talking to confessed to it first. Even if I learned that a friend was seeing someone, I was careful about how much I told them. I learned that an occasional generic depressive episode was more acceptable than long-standing mood instability. I learned not to talk about intergenerational trauma or self-injury or delusions. I went to college. I got a job. I developed better impulse control in public. I learned how to appear to others as a normal, sane, functioning individual (which is different from actually being a normal, sane, functioning individual). And every time I messed up, every time I let something slip, I internalized the other person’s reaction: the awkward silence, the shock, the condescension.

But then something interesting happened. My son was born, and I discovered that when I mentioned his birth defect to people, they reacted exactly the same way. Even though it was a purely physical condition they could see for themselves, my speaking openly about it made them uncomfortable. They scowled. They fell silent. They looked away.

I now understand, after years of surging self-hatred every time I recalled the high-school incident, that my teacher’s reaction was formed by social prejudice and that I had no reason to be ashamed. I understand this intellectually, and yet I feel uncomfortable writing about it even on an anonymous blog. The social process that tells us what is acceptable and what’s not, that pushes madness and sickness and just plain difference underground, that makes so many people unwilling to seek help, is very effective. Emotionally, I haven’t overcome that internalized stigma.

Life without medical equipment is NOT the goal

“How long will he have to be on oxygen?”

During the year that my son was on supplemental oxygen full-time, I heard this question almost every time we left the apartment. The more I heard it, the more it struck me as an odd question. The answer was, of course, “As long as he needs it.” And the answer to “How long will he need it?” was “We have no idea.”

I suppose there may be cases where someone has a set date – a surgery, perhaps – after which they will no longer need oxygen. For my son, though, the oxygen was not like braces or a cast that would come off at an appointed time.

When we eventually got the go-ahead to try weaning him off oxygen, beginning in the daytime, I found myself being constantly congratulated. “Wow! No more oxygen!” everyone said, beaming. I did not share their enthusiasm. I found myself trying to explain to everyone that 1) he was still on it at night and during naps, and 2) we were still monitoring him to make sure that his oxygen levels were OK, and 3) he would need another echocardiogram to make sure that being without supplemental oxygen wasn’t damaging his lungs or heart.

“But still, it’s a step in the right direction!” they told me. “It’s good news!”

And I’d mumble, “Uh, yeah, I guess.”

Don’t get me wrong – it was much, much easier to do everything without the oxygen. Contrary to what one of my son’s doctors seemed to believe, I did not enjoy carrying around heavy tanks and untangling tubing every five minutes. But the oxygen gave me a certain peace of mind. With the oxygen on, I was fairly certain that my son was getting the help he needed to breathe well. Weaning him off of it meant uncertainty and stress. It meant frequent spot checks and nights with a pulse oximeter’s false alarms. When he passed his overnight pulse oximetry test, it meant fighting with doctors and insurance to keep some equipment on hand for colds and other as-needed situations.* And it meant waiting for multiple follow-up tests, knowing that the results might mean going back on oxygen and that he would be less compliant since he was older and used to being without it.

But other people didn’t see all of this. All they saw was the lack of a cannula in his nose. “Congratulations! Your life must be so much better now.” What they perceived as simple victory was, for me, provisional and emotionally complicated.

I don’t mean to criticize. I never looked at anyone who said this with hard feelings or took offense. What I’m trying to get at is that the experience of actually living with medical equipment is very different from what is perceived by others. Similar to how wheelchair users may perceive their wheelchairs not as limiting but as empowering – after all, it’s the thing that enables them to get around, or makes getting around easier if they are able to walk – equipment such as oxygen and feeding tubes, while they can be frustrating at times, are not destroying quality of life. They are preserving quality of life. Being able to breathe and eat goes a long way towards quality of life.

I think many people look at medical equipment (especially on children) and feel sad and uncomfortable. This leads them to say things like, “But he looks so healthy!” What they are missing with that but is that the equipment is what’s keeping the child healthy. The oxygen is the reason he’s pink and cheerful. The g-tube is the reason she’s a decent weight. Take away the equipment and eventually you’ll have a pale, gasping, emaciated child that fits your image of medically complicated.

Doctors do this, too. One pediatrician told me “He’s breathing well” and implied he didn’t need the oxygen, even though my son was not only wearing oxygen at the time but also making rattling gurgly noises that turned out to be from an undiagnosed airway defect. Another pediatrician told me that we should start weaning him off because it was normal to have sats in the 80s. (Both of these pediatricians were subsequently fired.) I felt a lot of pressure from the medical establishment to get him off oxygen, even when we had a cardiologist saying “Absolutely not,” and I wondered – why? Why is this such an important goal? Shouldn’t the goal be my son’s health? Shouldn’t the goal be for him to thrive?

If he needs oxygen to thrive, then the oxygen is part of attaining that goal, not a barrier to it. And so I find myself fighting, and fighting hard, to keep equipment that everyone else thinks I should want to get rid of.


*So far, since the discontinue order, having oxygen equipment and the pulse-ox at home has saved us two trips to the ER due to colds and one inpatient stay after general anesthesia. And yet his PRN order has been contested at every turn.

This is my brain on tennis.

I suck at sports, but I’m going to use a sports analogy.

You know those machines that spit tennis balls at you so you can practice your swing? Imagine you’re practicing, and it’s going great – you’re hitting 90% of the balls. Then, maybe it’s your imagination, but it seems like the balls start coming a little faster and it’s harder to hit them. OK, now they’re definitely coming really fast, you’re only hitting maybe 50% of them, and the other 50% are hitting various parts of your body. Finally, the balls are coming so fast one after the other that they’re just a blur. You’re not even trying to hit them anymore. You drop your tennis racket and stand there motionless, being pummeled by rapid-fire tennis balls, wishing you could either turn off the machine or walk away.

Why can’t you? Because the machine is your brain, and the tennis balls are your thoughts. It’s kind of hard to walk away from your brain.

This is my metaphor for what happens to my thinking during hypomania. In the beginning, it’s great, I’m having lots of exciting ideas and I am able to use them constructively (write a blog post, design a hat, etc). But as the thoughts come faster and faster and there are more and more of them, I start getting confused and overwhelmed, until I can no longer distinguish one thought from another. And yet, I can’t turn off my brain. I can’t make it stop firing thoughts at me.

This is especially fun when lying in bed trying to sleep, because I know that my toddler will wake me up at 5 AM demanding medicine and food and stories. And forget about napping tomorrow. I’ll be getting creamed at metaphorical tennis practice while he naps.