We Are All Noncompliant

noncompliant

Noncompliant logo from Bitch Planet

I learned something about ME/CFS advocacy from a comic book. Now wait, stay with me. I realize this sounds bizarre, especially coming from me. I haven’t read a comic book since I was eight years old.

Enter Bitch Planet, a comic written by Kelly Sue DeConnick and drawn by Valentine De Landro. The comic is, as DeConnick says, a take-no-prisoners, angry feminist, give-the-establishment-the-finger story of a future world dominated by men to an absurd degree. In this future world, any woman who is too loud, too opinionated, too greedy, too big, too small, too black, too anything the establishment doesn’t like, is labeled noncompliant. If the powers that be deem that a woman is permanently noncompliant, she is shipped off-world to Bitch Planet, a prison where she will pay for her sins (and be victimized by the men and compliant women who work for the system).

I love it. Everyone should read it (although fair warning, it is rated “Mature” for a lot of reasons). But it wasn’t until my second read through the series that I saw the lesson for ME/CFS advocacy:

We are all noncompliant. No matter how we approach ME/CFS advocacy, no matter how reasonable our requests, we are noncompliant because we are asking that things be done differently.

  • When you demand NIH invest an appropriate level of funding in researching our disease, you are noncompliant.
  • When you demand that medical education actually educate healthcare professionals about our disease, you are noncompliant.
  • When you object to demeaning and trivializing portrayals of the disease, you are noncompliant.
  • When you reject inappropriate treatments, you are noncompliant.
  • When you send an email, sign a letter or petition, no matter how politely it is worded, you are noncompliant.
  • When you express anger about any aspect of the science, medicine or politics of ME/CFS, you are most definitely noncompliant.

The government believes that it already acts in our best interests. Newcomers to the field believe they know the best way to do this science, without the input of patients. Many policymakers would prefer that we sit down, shut up, and let them do their jobs the way they want.

Those of us who demand accountability, data, and respect are inconvenient, even “vexatious.” It doesn’t matter how nicely we ask. It doesn’t matter how softly we speak. It doesn’t matter how many times we say “yes” or “ok” or “thank you.” The mere fact that we reject the popular narrative of “chronic fatigue,” and that we expect our government to do what is necessary to solve the problems of this disease, means we already do not comply with the way things are being done.

I say, be gloriously, defiantly noncompliant. Speak truth to power. That doesn’t mean screaming and giving people the finger all the time. We must use the tools of data and reason and history and personal narrative, as well as the tool of anger. But as we advocate, we must recognize that the very act of advocating means we’re not playing along, and that some people will resist us for that reason alone.

But that doesn’t worry me. Because noncompliance is an act of bravery, and I already know you are brave because you are still here. You have not let ME/CFS defeat you, and your advocacy asks for reasonable things: adequate funding, adequate education, adequate treatments. The nature of the beast is for these reasonable requests to be met with some degree of resistance.

Be brave.

Be noncompliant.

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20 Responses to We Are All Noncompliant

  1. Betsy says:

    Great post -such smart writing. Thanks.

  2. Amy says:

    gorgeous post, Jennie

  3. Rivka says:

    “Be brave. Be noncompliant.”

    Great!

    For those who are able, hold a demonstration– even a one woman or one man demonstration — in front of your local federal building. Just you and a sign (demanding research funding for ME) is all you need.

  4. ahimsa_pdx says:

    Great post!

    I’ve heard of Bitch Planet but have never gotten around to reading it. You’ve inspired me to read it now.

    I like how you added that non-compliant does not mean screaming or angry. I can be politely firm while standing up for my rights or enforcing my boundaries.

    One problem is that some folks have an expectation (perhaps not even conscious) that patients, esp. women, should simply be quiet and wait patiently. If that’s seen as the correct behavior then any time you make reasonable demands, or ask difficult questions, you may look pushy and rude to the folks in charge.

    Thanks again!

    • Jennie Spotila says:

      You make a really important point about expectations. Women are still expected to be quiet. Patients are expected to be patient. And non-scientists are definitely expected to keep their noses out of science. Not everyone we encounter has these expectations, but many do.

  5. Lynn says:

    Well written. I am going to copy this and look at it from time to time to remind me that what we are doing is important and ok. Knowing how to be assertive has taken me years to learn. I have always been a quiet person loathe to upset anyone. It took a long time to realise it was ok to have a different opinion and voice it. It is challenging but worthwhile. I try my best to advocate for our disease. I try to be polite, but assertive. I am not a natural leader, but I am trying. What you have said is so true. Thank you. I will be sharing.

  6. Jan Lewis says:

    Beautiful Jennie!

  7. kathy d. says:

    Yippee for non-compliance!

    Double yippee for non-compliant women and people with ME/CFS!

    Women wouldn’t have gotten the vote without being non-compliant!

  8. N.A Wright says:

    So first a declaration of biases – old white male. As a much younger white male I was very much impressed with feminist thinking: feminism appeared to offer a way out of the straight jackets of gender roles for both men and women which were suffocating everyone. Later as a parent of daughters my thinking on feminism became broader and a direct involvement in politics encouraged a much more sceptical view of what all isms actually offer. For me, feminism as operated in the wealthy world was just another means of getting advantage for the middle classes, sure there’s plenty of rhetoric about helping less wealthy, less educated women, but in reality things have changed little for t either women or the men in their lives who are at the bottom of all western style societies. For them feminism just replaced one set of compliances with another, the noncompliant just changed from being mostly women, to being mostly poor. I guess my noncompliant label would now be “Marxist Feminist/Libertarian Socialist” – not sure where that would land me on Bitch Planet.

    Compliance seems to me to involve many complexities – I’d consider myself proudly compliant with all those Laws that ensure health, freedom and well being of the citizens of the society in which I live, even if there are cultural and social conventions within that society that I energetically reject. And even where there are cultural and social conventions that I dislike, I may be frequently compliant to them because to do otherwise would produce unnecessary upset to my fellow citizens.

    The strongest convention that we all – even the most determined non-complier – have to comply with is that of language. If we refuse to speak to other people in language that they accept and understand we are very unlikely to get any useful response from them. I find it interesting that the Act Up model – which might be cast as an uber non-compliance campaign strategy – is so frequently referenced for ME/CFS advocacy. Act-Up had its roots in 1960s/70s US Counter Culture activism and one of the more painful lessons the counter culture activists learned was that you could not invent your own language and expect others to understand you; the consequences of maintaining that course led variously to isolationism and to cultism both of which all too often led to abuse or violence. And Feminism was by no means immune.

    Fictional non compliance is almost always heroic, in real life it rarely is, instead non compliance tends to grubbily facilitate con artists and sociopaths. We shouldn’t be seduced by those rare cases of heroic non-compliance – we are mostly not Solzhenitsyn, or Mandela or Gandhi or Byron or Giordano Bruno. Mostly we have to use conventional language delivered in conventional terms and in conventional contexts to actually be heard and understood, which is all far more boring than escaping from Bitch World. Yes I’d love make the world of ME/CFS better as Swampthing (I have the looks) but frightening or offending the other side just doesn’t work no matter how many times you redraw the cels. Graphic magazines (no please not the c***cs word) can be inspiring but they allow artists and writers to explore ideas not constrained by the real world – take the inspiration and leave the messages in the gaudy four colour print is proably best practice even for the non-complier in you.

    • Jennie Spotila says:

      “If we refuse to speak to other people in language that they accept and understand we are very unlikely to get any useful response from them.”

      I completely agree. I’ve said this in advocacy meetings, in public speaking, and in meetings with federals – we have to make sure we are speaking the same language and understand each other.

      “they allow artists and writers to explore ideas not constrained by the real world – take the inspiration and leave the messages in the gaudy four colour print is proably best practice even for the non-complier in you.”

      Indeed. Bitch Planet is a metaphor, and useful in a number of contexts. Noncompliance does not equal chaos and anarchy. And I would encourage ME/CFS advocates not to be afraid of being labeled noncompliant. The test, for me, is “are you getting results?” If not, then time to reexamine what you’re doing and how you are doing it.

  9. billie moore says:

    We will NOT shut up and sit down. No more of that.

  10. RobinHood70 says:

    Very well said, Jennie, and so true. One of the things I see, and object to, so often in the ME/CFS discourse is how much some patients and advocates attack and deride anyone who doesn’t fully understand every last thing about ME/CFS, or worse, who dares to disagree with the current ME/CFS doctrine.

    I understand the source of that, because we all feel it at one point or another, some more so than others.

    But in the end, what it comes down to for me is this: if all you do is shout at someone, they’ll stop listening to you very quickly. If all you do is spout beliefs at them, beliefs that have no rational basis, they’ll deem it pseudo-religious dogma and stop listening to you equally quickly. There’s no better proof of that than how we treat the psych lobby because they’re most certainly guilty of perpetuating beliefs borne of confirmation biases that actually have no hard evidence when you get right down to it. But if patients/advocates aren’t careful, and I see this very often in forums, we end up doing the same things, being subject to the same types of confirmatory biases with no evidence that the psych lobby is.

    I believe, much like you, that we have to engage, and as you say, to be non-conformist; we can (and sometimes must) even be angry at times. But however, whenever, and for whatever reason we communicate, we absolutely must take care to be seen as rational, reasonable human beings rather than as fanatics or as children throwing temper tantrums. If we don’t, our message will simply be ignored.

  11. Janice Sikes Rogers says:

    Communicating in real time must be assertive! Informed by history, information and sanity with passion—the struggle is always personal.

  12. Joe Landson says:

    “We aim to misbehave.” (Or be vexatious and noncompliant.) Browncoats!

    • Jennie Spotila says:

      “May have been the losing side. Still not convinced it was the wrong one.”

  13. Susan Wenger says:

    I’d take this a step further. It doesn’t help if you demand nothing, object to nothing, say nothing. ME patients are noncompliant merely by virtue of having a disease that so many people dismiss as psychological.

  14. Some well-known quotes on struggle, pain and victory that we all need to remember.

    ‘All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.’
    —Arthur Schopenhauer

    ‘There are three stages of scientific discovery: first people deny it is true; then they deny it is important; finally they credit the wrong person.’
    ―Alexander von Humboldt

    ‘I’ve seen too much hate to want to hate, myself, and every time I see it, I say to myself, hate is too great a burden to bear. Somehow we must be able to stand up against our most bitter opponents and say: ”We shall match your capacity to inflict suffering by our capacity to endure suffering …. Send your propaganda agents around the country and make it appear that we are not fit, culturally and otherwise, for integration, but we’ll still love you. But be assured that we’ll wear you down by our capacity to suffer, and one day we will win our freedom. We will not only win freedom for ourselves; we will appeal to your heart and conscience that we will win you in the process, and our victory will be a double victory.’
    —Martin Luther King

    ‘A blow, expected, repeated, falling on a bruise, with no smart or shock of surprise, only a dull and sickening pain and the doubt whether another like it could be borne …’
    —Evelyn Waugh, ‘Brideshead Revisited’

    ‘Success is not final, failure is not fatal: it is the courage to continue that counts.’
    —Winston Churchill

    ‘First they ignore you, then they laugh at you, then they fight you, then you win.’
    —Mahatma Gandhi

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