(Dis)Ease: The American Medical Associations decision to reclassify obesity

A Month ago (June, 2013) the American Medical Association voted to reclassify obesity as a disease. This was met with some very good critique from Fat Activists (here, here, and here among others) and brief flurry of media attention - largely consisting of opinion waiving about obesity, fat people, and the future of health care in our nation-state.  The usual suspects were trotted out, interrogated, and in the end the matter was but back to bed with the usual sentiments regarding the need for more personal responsibility and education for those poor (or disgusting, depending upon the subtly of the audience) fat folks.  It was, it would seem, Much Ado About Nothing.  After all, as most news outlets informed us, the AMA has no legal standing and the move is a largely symbolic and/or semantic one. 

This is where a lot of news outlets - and scientists - got it wrong.  The AMA may not have legal power, but they certainly have epistemic authority.  This move might be semantic and symbolic, but that hardly means it is without consequence.  This move by the AMA has very real impacts upon fat individuals, upon the science investigating "obesity" and upon our ideas about disease. 

When starting this blog post I pulled up a bunch of dictionary definitions of "disease" I think I like this one the most:

1. A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.

2. A condition or tendency, as of society, regarded as abnormal and harmful.

3. Obsolete Lack of ease; trouble.

Though I will attend to the first two options throughout the Blog post, in the end I think we will find that #3, the archaic or Obsolete definition is perhaps the most salient one: Trouble. 

Defining Disease

With all the hullabaloo you might think that the AMA is the first professional association or medical authority to classify obesity as a disease.  You would be wrong.  Medicare classified obesity as a disease (and therefore eligible for benefits coverage) way back in 2004.  In a lot of ways the AMA is late to the game.  You might also be wondering, "what was obesity before June of 2013??"  After all, we have been fighting a war against an "obesity epidemic" - how do you have an epidemic without a disease?  And when you went to the doctor and they explained the BMI to you and informed you that you were obese, that seemed like a diagnosis, didn't it?  It even appears on the billing forms with an official number and everything.  It seems like we have been treating obesity like a disease for quite some time now, but prior to Tuesdays ruling the AMA considered obesity to be a "'complex disorder' (Policy 7 H-150.953), 'urgent chronic condition' (Policy D-440.971), 'epidemic' (Policy D-440.952), and 'major health concern' and 'major public health problem' (Policy H-440.902).[1]"  The council tasked with evaluating and making a recommendation about the classification of obesity as a disease (and incidentally recommended against the reclassification) noted that "disease" has no set definition.  They note that no definition of disease exists which if implemented would positively render all currently labeled diseases, as disease; "Indeed, the medical community’s definitions of disease have been heavily influenced by contexts of time, place, and culture as much as scientific understanding of disease processes.[2]" 

            Thus, part of the difficulty in deciding if obesity is a disease is that we don't really agree on what a disease is.  The Committee on Science And Public Health (CSAPH)  Rep 3-A-13 report cited an earlier report's table of definitions[3] - which amount to the conglomeration of several dictionary definitions of disease.  So the AMA did the same thing that I did for this post, or any college student writing a term paper might do.  They pulled open a bunch of dictionaries and tried to find some consensus. In the end what made obesity a disease wasn't whether it fit a definition of disease (though that in itself is an interesting query) or whether the subcommittee found evidence in the medical literature to support the classification of obesity as a disease -- No, rather like the stripping of Pluto's planetary status, Obesity became a disease by vote.

In fact a great deal of scientific knowledge becomes scientific fact through the democratic process of voting.  Voting is what made homosexuality a disease, and then a disease if it upset you to be homosexual (DSM IV), and then not a disease at all (DSM IV-TR) in the span of a few decades.  The world of classification is not the cut and dry pursuit of independent "fact" that we like to think of it being. Now, that doesn't mean that there isn't truth or fact to be accessed, it just means that the epistemological process isn't always linear and it is often influenced by time, place, and culture much more than layman discussions of science account for. In fact there is no reason to think that what we think of as a certain disease entity today, and what we label as being the same disease entity in the past - they may not be the same entity at all (For a far more eloquent discussion see Ludwick Fleck).  What is more important is that they certainly were not thought of, interacted with or treated in the same way in the past, and this changed how they were researched, conceived of and what explanations and treatments were accepted.

 So the designation of obesity as a disease, or condition, or lifestyle is a semantic move. BUT that semantic move has a lot of baggage and meaning attached to it.  It also has very real impact upon how that entity (obesity) is thought about.  We could take the AMA to task for the definition they used, or the applicability of that definition but I suspect this has been done elsewhere.  I know that other sources have discussed whether or not this decision will be good for fat patients (incidentally the AMA committee based their recommendation to not change the classification upon the assertion that such a change would NOT improve health outcomes), and whether or not the classification is valid - but I have not seen a source that gets to the epistemic impact of this move.  So it is far more interesting at this junction to attend to the fall-out of the AMA decision.

Fuzzy meets fuzzy - Defining obesity

One of the primary reasons the AMA's own council on Science and Public Health recommended against classifying obesity as a disease was a lack of satisfactory definition of obesity: "Without a single, clear, authoritative, and widely accepted definition of disease, it is difficult to determine conclusively whether or not obesity is a medical disease state. Similarly, a sensitive and clinically practical diagnostic indicator of obesity remains elusive."  We know that the use of BMI alone leads to erroneous classifications of obesity (Tom Cruise is obese using BMI).  However, it is not just a matter of weeding the fatties from the muscle bound - there is much more to an adequate definition of obesity.

What is obesity anyway?  If obesity is a disease, what is the disease agent?  Is it fat - does that mean we all have some of the disease in us?  Is it too much fat? How much fat is too much fat?  What do we use to determine what makes a certain amount of adipose tissue too much adipose tissue? Do we use population distribution? ... How many deviations from the mean are we allowed to go?  Does that mean that as the population gets fatter, the level of acceptable fat moves with the population?  Should we use Social standards?  Should it be based on the point when fat begins to affect your health?  But then we would need to know how it affects your health, what the mechanism is, when it affects your health - that sort of thing that we actually don't have a lot of information on.  We could base it on statistical evidence, so the point at which excess fat becomes correlated to negative health outcomes (though we would need to pick a threshold and have a way to measure fat that is accepted and standardized).

The difficulty, and what makes obesity research fruitful to investigate, is that defining obesity as a disease is where the fuzzy meets the fuzzy; the fuzzy ways we define disease and health, meets the fuzzy ways we define obesity.  In certain ways obesity as a disease reveals the circular logic that comes from substituting common sense for data.  

• According to the AMA obesity is a disease because it is associated with negative health outcomes. 

• BUT the category of obesity exists to designate levels of adipose tissue that are healthy from those that are unhealthy (by virtue of negative health outcomes).*

• The categories are arbitrarily chosen, and quite wide

• BUT the existence of increased mortality at the high end of the obese category supports the idea that obesity is associated with negative health outcomes.

• Therefore, obesity is a disease.

* Except, that the methods of categorizing obesity are actually pretty bad at distinguishing who has too much adipose tissue and who doesn't.  They are also bad at accounting for why some people who exist in the category of "obese" fail to have negative outcomes, while others who do not fall into the category of "obese" do have negative health outcomes (and the often the same negative health outcomes like Type II diabetes and metabolic difficulties). 

Hmm...that does seem problematic, doesn't it?

Impacts:

So, beyond the problems of validity this move poses, what does this rhetorical turn of events do?  Why should we care?

Well, first of all it makes it so that No fat body can be healthy.  This is a big deal.  When we thought about obesity as a condition or a risk factor there left some room to think about fat bodies as potentially healthy bodies.  If excess adipose tissue in and of itself constitutes disease then no fat body can ever be healthy.

Now the idea of the fat body as always becoming (and never stable) is an idea that is pushed around a lot in fat studies.  The fat body is always becoming something - and usually it is becoming one of two things:  1) thin or 2) dead.   There is a certain narrative to the way that we talk about fat bodies.  There is a constant state of potentiality - you as the fat body are always the "before" picture.  If you are a virtuous fat body you are pursuing the end goal of becoming thin. You are actively attempting weight loss (though scientifically speaking your likelihood of success is quite slim).  If you are not actively pursuing weight loss than you are left as a fat body that is rhetorically painted as diseased and doomed.  You are dying. This AMA decision extends this logic to the realm of scientific fact production.  By making obesity itself a disease, the health or ill-health of the fat body is taken off the table.  You are fat therefore you are sick, end of story.  So even if you are fat but otherwise in perfect health - good BP, good lipids, no joint complaints, good sugar, exercise regularly, eat your vegetables, don't smoke, don't drink - it doesn't matter because you still have a disease.  Now this is very reflective of the attitudes that many physicians (particularly Bariatric physicians have) about obesity.  The fat body even when not presenting symptoms is just in a state of pre-sickness.  When presented with the case of a fat person who is in good health the response is often that the person is "just not showing symptoms yet."  This vote reflects that attitude about fatness - without new data, without addressing the literature that indicates one can be fat and healthy.  The definition has become the justification for the disease.  This vote attempts to effectively end the HAES(r) discussion.

This is why we should care about this ruling.  This move by the AMA, in defiance of their own committee's recommendation, substitutes common sense for evidence.  That is something that no one should be comfortable with.  Whether you are a Fat Acceptance advocate or you identify with the idea that fat is patient's rights issue - even if you are a obesity researcher that believes to the tips of their boots that fat is unhealthy this still shouldn't sit right with you.  This is not evidence-based medicine and it shuts down productive avenues of investigation and inquiry.

The move to classify obesity as a disease comes to soon.  We don't understand enough about obesity to call it a disease.  We can't agree on what obesity is, better yet what causes it.  Is obesity a symptom, or disease entity on its own?   How does obesity cause all the myriad diseases it is supposed to influence?  How can obesity be a symptom for certain other diseases, an outcome of health choices and behaviors and a disease all by itself?  By classifying obesity as a disease before we answer these and other important questions related to fat that we have just finally started to ask the AMA has filled in the facts we don't have - and that is going to affect how obesity is studied and treated from here on out.

Just look at the effect that the 2004 Medicare decision had - it bolstered the obesity epidemic paradigm and set in a particular way of seeing fat and obesity.  Just as we start to unravel some of that set viewpoint this decision again forces a particular way of viewing fatness that will shape research and funding in the future.   Think about obesity research as a message that we only have some of the words from (a two word phrase from a game of hangman for instance).  This move fills in the first part of the sentence and assumes that it is correct (without knowing it is), and now researchers will investigate the rest of the sentence based on that assumption. 

This solidifies obesity as a disease entity in and of itself - that creates a bandwagon for researchers - just as the obesity epidemic did.  This is a way of thinking that is intelligible to scientists and can be accessed to access funding (or in this case insurance reimbursement) but that means that only those strategies which address this way of thinking will be considered and proliferated.  To make this move without foundation is very dangerous.  It will effect everything from funding, to policy to hypothesis formation for thousands of practitioners for years to come.

Lastly, this is move that is yet another transition from what we do to what we are.  Michel Foucault argued that there was a shift around sexuality, from what we do to who we are.  With this shift comes a great deal of baggage and problems.  This shift in the way we think about obesity medicalizes a bodily state.   Fat goes from something we have, to something we are, to a state of automatic ill health.  This is highly concerning and highly problematic.  The medicalization of the fat body is not new, it doesn't start with the AMA, but this move does compound that status. 

This AMA move was supposed to be about easing the burden for fat people.  As the NY Times notes, some at the AMA hoped this change would "reduce the stigma of obesity that stems from the widespread perception that it is simply the result of eating too much or exercising too little[4]."  However, historically classifying something as a disease or as biologically based doesn't absolve the individual of the burdens of stigma.  At best the question of culpability remains (as it has with addiction or LGBT status) and at worst the condition is compounded by the stigma of disease.  We already see strains of this in conversations about whether or not Fat can be "caught" from friends and neighbors.

In the end we are left with what we started with - Trouble.

---

[1] http://www.ama-assn.org/assets/meeting/2013a/a13-addendum-refcomm-d.pdf

[2] Ibid.

[3] See Appendix, http://www.ama-assn.org/resources/doc/csaph/a05csa4-fulltext.pdf

[4] http://www.nytimes.com/2013/06/19/business/ama-recognizes-obesity-as-a-disease.html?_r=0

Why do your arms look like that?

As women in this country we are subjected to the reality that our bodies are (presumed to be) public property.  They are gazed at, commented upon, judged, policed - touched without permission. Ask any pregnant woman and she will relate to you the experience of strangers stroking her belly without even asking.  Who among us has not been subject to disapproving and judgmental stares?  To comments upon out clothing being too tight, too short, too loud -- too much or too little?  Female bodies are seen as decorative bodies, there for the viewing and pleasure of others.  Whether it is the subtle perusal of an unknown man, the disapproving gaze of other women - or the blatant cat calls of street harassment, the experience is objectifying and largely unpleasant.

"And sin, young man, is when you treat people as things"

This is the objection of Granny Weatherwax from Terry Pratchet's Disc World Novels (Carpe Jugulum),  followed by her ubiquitous attitude of "I can't be having with that sort of thing"

I am inclined to concur.  The trouble with the male gaze or the ostensible public property of female bodies is that they make people into things. Which leads me to the subjects of street harassment and fat shaming.  Street harassment is something most women have experienced from time to time - the experience of being yelled at, usually in a sexual or lewd way.  It is one of the many ways that we are reminded of how our bodies are public spectacle.  If you are a fat woman, street harassment may often come with comments about your weight.  It may also come from other women - in the form of dieting advice.  I have heard stories from fat women about being cornered in restaurant bathrooms and being given advice on how to slim down.  Or having other shoppers at grocery stores glare and comment upon your food selections (or in one particularly strange story start removing "fattening" foods from your cart).  The experience of being treated this way is complicated and upsetting - but I think what all experiences of street harassment and fat shaming have in common is that they treat people like things.

I have had mercifully few experiences with street harassment - either directed at my weight or my general appearance. I've been yelled at by boys from a moving car ("fat slut!"), and once in Cork a man came up and barked at myself and three other girls, and of course I have had the near ubiquitous experience of fat-shame in the doctors office (a subject for a different post).  However, the worst experience I ever had with fat shaming came from a surprising source - the Open House at a Women's Studies Graduate Program.

I know there are a lot  of well meaning people in the world who want to teach their children or themselves to not judge others based on size or skin color or impairment.  I met one such well-meaning individual when I was deciding which graduate program to attend. She was, admittedly, a bit strange from the get go.  She asked me a lot of impertinent questions about which schools I had applied to; where I had been accepted, where else I had gone to open houses - how much funding I was being offered.  This continued to be pressed until I finally told her I was considering one other school at that point, a UC - and no I would not tell her my funding package.  When she heard the name of the school she became strangely agitated that I had been accepted there "They took you? They didn't take me!" - it was a bit shrill and a bit condescending as we stood in the restroom after having lunch with faculty.  I really didn't know what to say.

This woman confused me, she presented herself as very friendly, open and progressive but also seemed strangely obsessed with me and my body.  She asked me about my experiences as a fat lady - did I get harassed? No, I said - I rarely had anyone comment on my body.  She nodded and seemed a bit confused.  It was hard she said, being a woman - so many pressures to be thin.  This woman had a daughter, and she confided that the state they came from (Bay Area, CA) was very appearance obsessed.  That she was concerned that her daughter would grow up to hate her own body - and that she (the mother) wanted her daughter to be accepting of everyone. She related that her daughter had started noticing differences in people.  She told me how she wanted to be sure that her daughter knew that everyone came in different sizes.  What did I do - she asked - if children commented on my weight?

            I was a little uncomfortable at this point.  This was before I had found Fat Acceptance as a group and the useful language that comes with it.  I had been fat for years and I was comfortable with who I was.  I had read Marilynn Wann's "Fat!so?" and even before that had come to the moment with family and friends where I requested that they stop insisting I wasn't fat. I as fat, I knew it - it was OK.  Fat was only a problem if you said it as an insult.  So I was torn, on the one hand I found this woman's insistence on talking about my body rude and a little bit insulting.  On the other hand I wished more people would be aware of the messages they were telling kids about bodies.  So I grinned, gritted my teeth and tried to hand out a few enlightening tid-bits about the idea that people come in all shapes and sizes and that she ought to treat questions about fat the same way she would inquiries about hair color.  I walked away and hoped it was the end of it.

It wasn't.

I must interject at this point that I had been nursing a migraine all day during this experience.  By early afternoon I couldn't take it anymore and I went home to take medicine and sleep for a few hours in the hopes of feeling better in time for the evening's mixer where I could meet faculty and staff.   By the time night fell my headache was manageable, though not gone.  I got dressed, went to the party and tried to have a nice time. And for the most part  I succeeded, until this same woman cornered me in a room with just her and her daughter.  The kid was cute - what 3-year-old isn't? We had a somewhat pleasant conversation where I told her about life in Tucson, AZ - until part way through the child tugged at her mom's skirt and a whispered conversation occurred.

I was informed that the little girl was fascinated by my upper arms.  The fat on my arms hung over my elbow - her mother informed me and reached over to pinch the fat.  The little girl nodded furiously.  I was shocked - not that the little girl noticed, kids do that.  They get to an age where they are figuring out how people are similar or different - they comment on people's skin color, their weight, their hair color, their able or disabled bodies.  The child in this was innocent.  However, her mother was not - and I could not believe they way she was handling this situation. 

 

The Mom proceeded to whisper to her daughter, they both whispered back and forth behind their hands (no really, actually behind hands).  She looked at me and said "I told her that it is because you are fat."  She looked at me and then in a very pointed way said "Remember how we talked about how people are different and that's OK?" More whispers.  "Some people just eat more than others, and they get big arms" There was then something about eating well and dancing a lot if she didn't want arms like mine ... I just stood there, flabbergasted.

This woman thought she was doing the right thing, she thought she was teaching her daughter acceptance and diversity -- and I had never been treated with such bigotry in my life.  I wanted to yell at her - I wanted to tell her that you don't pinch other people's fat.  That you don't use the word fat with a child and follow it up with a discussion about the presumed poor eating habits of the fat person.  That if you want to teach your child to be open to diversity and the broad spectrum of people in the world you should probably also teach them that it is rude to whisper and point!  That the act of whispering and pointing makes that person into a fetish - an object to be observed and commented upon but not interacted with.  I wanted to tell her how rude and intolerant she was being and how awful she had made me feel.  But I didn't.  I didn't because blowing up at another prospective student at an open house is unlikely to reflect well upon you no matter how justified the reaction, particularly when there were no witnesses.  I also didn't because my migraine had come back and I simply didn't have the reserves to deal with this crap.  So instead I just walked away.

When I went home that night I cried to my husband about how I had felt bullied by a three year old and her awful mother. The hardest part was that I felt like somehow this was my fault - that I had permitted this to happen by saying that pointing  out diversity was OK.  That somehow the fault was mine, that it was my issue with my fat since the pointing out of that fat made me feel hurt.

It took me a while, but eventually I realized that was crap.  The problem wasn't that the child had noticed I was fat - or even that Mom had said that I was.  The problem was that this woman had treated me all day as if I was nothing but my fat.  She treated me like an object - not a person.  All day she had been trying to be the progressive, accepting, hip graduate student who understood my "challenges" -- but what she was really being was judgmental. She only saw my fat.  She only interacted with me as fat.  She asked about being fat - what is it OK to call fat people? How do you deal with people seeing your fat? She never bothered to notice that I was a person.  When she sat there whispering, staring and pointing - she treated me as an object. And she taught her daughter to do the same. I was upset because that night I was treated as fat personified, a walking cautionary tale/diversity visual aid. I was changed from a person into an object.

I wish I could have that moment back, that I could tell her how this moment where she thought she was being progressive and open was the most humiliating fat experience of my adult life.  I wish I could tell her that if she wanted her child to learn to be open to all people, to not judge that she should first teach her daughter to treat all people as PEOPLE not parts - not skin colors, or fat arms, or old wrinkles. PEOPLE. And that part of that was treating all people with courtesy and respect - and not pointing and whispering.