understanding disability

​updated 8/17/23
I know other people out there feel the same way but I don't know so many people in my life that do so here: for the people that do understand I hope you feel seen.

A big thing I wanted to figure out when I first got real sick was why? I feel like that's a common question for anybody who gets sick you know, like I would like to know why this is happening please? Sometimes the answers are simple. Sometimes the answer is almost impossibly complex. It is my particular experience that lets me see the complex answer, because I am a complex problem.

​I remember when my migraines started again and it was the first time my auras appeared in full strength. A sizeable magenta hallucination popped up and I was sure it was real. I fell down the stairs after that and landed some time, somewhere, in a dark void where I was the only atom left. It was pretty scary to lose my mind but I also found a good chunk of it again, and I'm glad I got back. Somebody could tell you that the reason I lost my mind was because I suffer from a neurological disorder. I mean that's definitely true! Migraines are a nervous system disorder. It's my nerves and neurons that are in pain rather than receiving pain signals from somewhere else. It hurts like no other physical pain I've experienced, because it almost seems like it's not. It's somewhere unreachable yet all-encompassing. The pain screams for your fucking attention but will not yield to anything you try and fix it with, at least in my experience.

I seem to have a more severe case than most with chronic migraines; I averaged 22 migraines a month for months with failed treatment after failed treatment after failed treatment. Each migraine lasts at least 24 hours and I consider myself lucky when I have one that doesn't make me want to die. My visual auras make it impossible for me to see, read, or comprehend anything sometimes so as you might imagine, all those things contributed to the state of my mental health separate from the neurobiological and chemical changes that make you more depressed. Sometimes, now that I'm a bit better, I can tell when my mood is low due to a migraine or the postdrome stage. It's nice to be able to remind myself, Hey! This is the illness, not you. But of course, there's real depression present too. Of course, migraine sufferers are 6 times more likely to have depression because experiencing unrelenting pain tends to make you a bit sad. The two work quickly to create a positive feedback loop of utter misery.

So yes, the migraines are why I lost my mind because the physical psychological pain was too much for me. But why am I like this in the first place? It's a question that science says it doesn't really have the answer to and I suppose that's true. Migraines have been shown to be genetically linked, but that doesn't exist in my bloodline. People have been able to identify common triggers, but migraine manifests uniquely in everyone that has them. We've got some drugs that stop the pain when it happens, some preventative meds to take every day, various infusions and devices and needles in the head but everybody's treatment plan is different. The most common advice though is to live your most optimal life. Change your life, eliminate stress in every way you can and then you'll be fixed! Some people have a lot more fucking control over what they can change though so millions still suffer because this advice is practically useless, and I mean that literally.

The truth is that one of the largest sources and supporters of disability is the society we live in. Our idea of "able" is able to do what exactly? Be a productive member of this white supremacist, capitalist, patriarchal society and put in enough labor to justify our place in the world. It's not about humanity or equality or freedom or justice. It is not about your ability to be human, because "disability" is a universal part of the human experience. It's just about money, and greed, and dishonesty, and inhumanity. The real reason why I have migraines is because I have been abused on so many levels: on the societal and the institutional and the personal.

Severe childhood abuse, deemed an "Adverse Childhood Experience" by the CDC, has been shown to impart negative, lasting consequences on your health. Each question of the ACE quiz asks you about different ways a human being can suffer because of society: poverty, incarceration, familial abuse, mental illness, and addiction, just to name a few examples. Ranked high on the list of illnesses ACEs cause is chronic migraines. ACEs greatly increase your likelihood of developing chronic illnesses in general, along with mental illnesses and heart problems later in life. I believe each one multiplies, not adds. My score is an 8/10 and the bulk of my trauma occurred before I turned 11. Of course it continued after that, but I was born into a broken family that set the foundations for the rest of my life. 

The unrelenting abuse dealt by society is what broke my family, as it has so many others. Poverty does not exist without billionaire businessmen and trillionaire companies hoarding all their wealth. Incarceration would not exist without slavery and slavery still exists because of incarceration. Familial abuse... I believe it is a learned pattern, but not only from parents. Society is a skilled teacher and it's not surprising to me that people put their pain into those closest to them. Mental illness and addiction are fed by society's ignorance of the root cause. They profit off our suffering and it makes us easier to control, less able to love right. I believe that in a loving world, I would not be as sick as I am now and it wouldn't be from finding the right drug cocktail. I believe that a loving world would save millions, and in this post I am only thinking of the small percentage of humanity suffering this specific type of abuse. I hope you're able to imagine how a loving world could save millions in millions of ways and places too.

I just want to note for the real cynics out there that I'm not suggesting that a loving world will fix all disabilities. Genetic and congenital diseases obviously exist regardless of constructed society, and disabilities brought about due to natural long-term effects of outside pathogens or accidents of nature may not be able to be avoided. However, I firmly believe that this world generates disabling, abusive conditions for basically everybody and that a loving world is the only goal worth pursuing. A loving world will give real change and real healing.

I understand why people were and continue to be drawn towards editing the architecture of this world as a method of change. Were those not the tools we were given? But the fundamental issue with our society, no matter how much we reshape and reform, is that the very material we are building with is flawed. These will always cause structural issues no matter what form they take and so this abuse of humans continues on. Our society can’t function without it, and I am standing here pleading for everyone to see the reality we live in. This is what we were born from. Look at yourselves! Is this really what you want to be, the way you want to live life in this world? You should be ashamed of yourself, not covering up with thorny lies and stomping on shit like a pissed off piece of crap. Give me a fucking break. I am sick of living in this world because nobody fucking deserves this. I am made sick by living in this world and I see now that the clear, lasting solution to this huge problem is to change the world. After diving into a deep depressive episode about a year ago, I’ve come out with a fairly strong will to live because I know I deserve to and can live the life I want to. The way the current world wants me to be is a hollow shell of who I could be. It kills us every day, over and over again. Yes, you grow a thick skin and yes, you can survive for a time but personally, I’m tired. I don’t want to do it anymore, become a fake, artificial version of myself when the only life worth living is one where you can be you. Let us breathe, please. I know in my mind that there are millions of people like me and many more much worse off as I have had my privileges. I think all our pain is important. It matters because this is a reflection of what our society defines humanity to be. I say Fuck you, because this isn’t humanity. It’s fucking barbarity and it’s fucking ugly.