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.