On being a white activist

I’m White. Capital-W, raised in the suburbs, maybe 2 Black kids at my elementary school White. I named this page after a quote by Martin Luther King, Jr: In his sermon “Transformed Nonconformist” he said “Everybody passionately seeks to be well-adjusted,” he said. “…but there are some things in our world to which men of good will must be maladjusted….Human salvation lies in the hands of the creatively maladjusted.”

In the same sermon he also said “There are those who tell me that I should stick with civil rights, and stay in my place. I can only respond that I have fought too hard and long to end segregated public accommodations to segregate my own moral concerns. It is my deep conviction that justice is indivisible, that injustice anywhere is a threat to justice everywhere”.
King was a hero to Black people, and the widespread maltreatment of Black people led him to fight the underlying system which begets oppression. He chose to strike at the heart of the issue, and as a result he fought for all of us.
Black communities suffered from widespread poverty, so he embraced socialism and fought the causes of poverty, greed and the capitalist systems which were built around it. Black folks were drafted and killed in combat at disproportionate rates, but he spoke out against the Vietnam war as a whole. If he’d lived longer, seen the rise of queer awareness and the widespread oppression of queer folks, gay and trans people of color especially, I’m certain he would have been a champion for queer people as well.
King was many things. He was a civil rights leader, a socialist, one of the greatest orators and philosophers of the modern age. Unlike many Black leaders who quite reasonably chose to focus on the Black audience, he chose to speak to everyone, to attempt a large scale transformation in the viewpoints of the general population, a massive paradigm shift in which non-Black, non-activist people would start to see some of the injustice which society makes it so easy to ignore.
King was and is a Black hero, first and foremost. I don’t claim him as my own; he was not a product of my culture. But I can listen. I can say “this was a very smart man”, read his works, think on and internalize his philosophy. I can learn to center the people most affected by a particular issue, to signal boost rather than speaking for myself on subjects which do not affect me personally. I can encourage others to do the same.
In “A Proper Sense of Priorities”, he said “On some positions cowardice asks the question, ‘Is it safe?!’ Expediency asks the question, ‘Is it politic?’ Vanity asks the question, ‘Is it popular?’ But conscience must ask the question, ‘Is it right?!’ And there comes a time when one must take a stand that is neither safe, nor politic, nor popular. But one must take it because it is right.”
I’m just trying to do what’s right.

Brains Vary

Great minds do not think alike.

My mother is a dancer. She thinks in movement, choreography. I think in emotional impressions. Ideas, abstractions, art.

I used to live much deeper inside my head than I do now. I found the outside world confusing, or rather the people in it and their bizarre expectations of how I should think and act. I learned over the course of years of painful trial and error to think and act more “normally”, but adapting changed me profoundly. I will bear the scars and regrets of that process for the rest of my life.

I learned to think in shorter, more discrete ideas. It dampened my creativity, but translating abstract ideas for neurotypical people is a necessary survival skill for Autistics. I don’t think as creatively now, or quickly, and I miss that. But heaven forbid “normal” people should have to learn to accommodate us. That would be unreasonable.

Thinking in discrete short ideas has made it easier for me to communicate verbally, but only when the ideas which need communicating don’t require foundational explanation, and I lost a great deal in the transition. I could no longer connect disparate concepts as well as I once could, and my imagination became limited by the shared assumptions of neurotypical society. I rebelled as much as I could, but I cannot say I won that war. I’m pretty weird still, but not like I was. A Pyrrhic victory at best.

Whatever operating system you use, regardless of the layout of your internal world, know that each person is unique, and that different people’s ways of thinking each have their own strengths. Stand in solidarity with your fellow freaks, fight back against the people who would steal your birthright.

You are not alone.

Hello world! (because I like WordPress’s default title)

One of my partners wrote a short piece showing plainly what it’s like to have your health betray you at a relatively young age. Please respect young people with disabilities, especially invisible ones. We have enough on our plates without your judgement.

chronic pain in the arse

Hey. My name is Felix. I’m twenty-one years old and I made this blog a few months back in a moment of trying to force myself to do something productive. I used to be fairly active in the writing community. I did poetry. About three years ago, my bipolar disorder went into full-blown temper tantrum mode and threw non-stop episodes at me. I wouldn’t hesitate to say these were some of the worst in my life. Suffice to say, writing took a back seat during this time. Then, during a hospitalization in early January, I eventually managed to level myself out. My lithium had finally taken effect and reached a therapeutic dose, and the hospital I was at actually gave enough of a damn to try to teach us all some coping mechanisms.

During my last hospitalization, I started getting a nagging back pain. At first, I could deal with…

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“Big Pharma” & Privilege: Or Why I Wish Allies Would Stop Using This Phrase

This is the single best article on chronic illness I’ve ever come across.

Yes, drug companies are greedy. They overcharge. They hire lobbyists to subvert legal protections through large scale bribery. They fail to produce many medications that would transform people’s lives, either through lack of research and testing (research into rare diseases is expensive, and natural chemicals like cannabis aren’t profitable for various reasons) or through inadequate production of existing drugs. And they promote the use of drugs which are unnecessary or harmful (statins in people with high cholesterol but no history of heart attack, gastric acid inhibitors before the discovery of H. Pylori). But they do create much needed treatments and cures – I’d be long dead if they didn’t. And the natural lobby is no better – remember Ephedra?

Foxglove & Firmitas

A friend posts an article on Facebook about how the United States’ medical system does not meet the needs of those with chronic pain. This is a reality that I have experienced. This is a reality that I regularly speak to others who experience chronic pain have also experienced. About a month ago when I was at the doctor’s office for my annual exam, I overheard 2 medical workers talking about how they hate when patients say they’re in pain, because they know they’re over-reacting. I was horrified, but it wasn’t the first time I’d heard someone in the medical field say something like this.

When we talk about chronic pain, and disability in general, inevitably someone pops up to say something like the following:

I think chronic pain (and other illnesses for that matter) should be tackled with a holistic approach. Putting our faith completely in the medical system…

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On trigger warnings for medical content

This post explains in graphic detail why trigger warnings are so very essential for people with a traumatic medical history. TW medical triggers (yes, this is a TW for the content warning).
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MASSIVE content warning for medical triggers: blood, needles, hospitals, IVs, injections, surgery, blood draws, etc.
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My history with needles is not a good one. It started with me being a very sensitive kid (Autistic, and therefore vulnerable even compared to other children) and associating injections with authority figures forcing me to endure pain. When I was seven I fell and gashed my head; I was in a great deal of pain, stressed and crying. My mother rushed me to the emergency department of the local children’s hospital, and minutes after arriving they injected anesthetic directly into my forehead, then stitched me up with nothing but the local and maybe some nitrous. (I don’t remember the incident with great clarity, as your might imagine.)

When I was 18 my appendix sprung a leak. I spent four and a half days in recovery following an emergency appendectomy as they treated the sepsis. I woke up after surgery in indescribable pain, with a catheter, a plastic tube down one nostril (an NG tube to empty my stomach), and three IVs, two active, one spare. At some point one of the active IVs was removed and the spare activated due to irritation at the entry site.

In my early-mid twenties I developed a blood disorder called immune thrombocytopenia, or ITP. People with ITP lose the ability to clot at semi-random intervals, as our bodies go haywire and start confusing our platelets (the part of blood that makes clotting happen) with foreign bodies (infection). This necessitates semi-frequent blood draws to check platelet levels and the occasional hospital (emergency department) visit. I was diagnosed in the hospital after two or three days of tests, including five separate blood draws and talk of a bone marrow biopsy. This turned out to be unnecessary, but I knew it was a possibility and prepared myself emotionally to endure it.

Those are just the highlights. I associate needles with hospital visits, near death experiences, and incompetent IV techs. I have at least half a dozen scars from badly done IVs and botched blood draws. (You do NOT want to know what a blown vein looks like. You especially don’t want to find out in a high stress environment and knowing they’ll have to try again.) I have endured needles again and again and again, despite a panic reaction that makes my legs weak. When necessary I have gotten regular STI tests, even when I could easily have skipped them with no repercussions, because I value the health of my partners above my own comfort.

When I ask for a heads up before an image of a hypodermic or a graphic description of an injection, this is why. I am not weak. I am a chronic pain warrior. And I deserve your respect.

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