A reminder from the fog

I have things I want to do, want to write about. I wanted to write about disability voting for Persephone Magazine (I contribute occasionally, though lately it’s mainly been food posts). I’ve had a number of things I intended to write about for here. But every time I’ve tried to sit down to write something prompted by myself, I’ve ended up staring at the writing field blankly.

I’m frustrated with myself. A part of me spends time berating myself, reminding me that I can and do write fairly well some times so I ought to be able to churn something serviceable out when I want or need to. It’s more than writer’s block- I get that too sometimes. I have all the ideas there, but the brain fog has been interfering with my ability to put them into the text box coherently.

I know where the fog comes from- it’s my fibro and arthritis pain mixing with my neurology. But I also know where the frustration and the self doubt comes from too. I’m not the only one struggling with that one.

I’ve had friends who have told me things about their struggling. Some do have brain fog, but a number of them don’t. Some have had disabilities their whole lives, some have had them without words for them, and some who gained disabilities later on and their lives. Many have very different tasks that they struggle with. Some  of them struggle more with tasks I also struggle with. A number of them struggle mainly because the things they need to succeed aren’t met or are met hostilely.

See, it’s the hostility that makes a lot of it all worse. A hostility to the idea of alternative needs in order to accomplish things. Hostility to the idea that one experience of a situation is not going to be the same for each person. And this hostility breeds some dangerous, some might say poisonous, memes in our culture.

I think I’ve talked about memes before, not in the internet sense but in the anthropological and sociological sense. They are basically a unit of culture. An idea, an image, archetypes- these are memes, elements that make up culture and society. We live in one which perpetuates hostility towards people with disabilities. And a lot of the memes that make up that hostility are ones that we find ourselves repeating when we are frustrated.

That our needs aren’t real. That we are actually just not trying hard enough. That we are actually just bad people, or lazy people, or selfish people. None of these are true, but they are memes in our society that we have for people.

There’s lots of things that perpetuate it. Some of it is direct- people actually saying these things. Some of it is a consequence- someone using these views to “legitimize” denial of access. And some of it is subtle- like inspiration porn. A lot of people have talked about that last one in recent months. But all of it is a part of our society and culture. Not a good part, but still a part.

And we are all taught culture through these memes. It’s not an avoidable thing. True, some people don’t get the direct impact of it from the subtle parts alone. But they get it indirectly, from the messages that the people around them absorb and then act upon.

It is impactful, the expression of these memes. Someone with attention issues might need to doodle to keep their mind on a speaker, but get called unprofessional for doing so even though they need it to process what they are hearing. Another person might suffer from chronic migraines when around certain stimuli (like florescent lights), but have their need to have alternative lighting treated as being finicky or annoying. Someone who might need things in simpler language might get left out of choices about their lives, or are told that their goals aren’t reasonable without explanation. A child who uses an AAC device might find themselves or their parents pressured into a segregated classroom.

Years of this cultural environment takes their toll. When a person subject to it, to the “pointy end” of it, becomes frustrated about something, it turns inward. The fact that they’ve worked themselves to exhaustion, or have agitated a difficult part of their health by going beyond where their limits are, doesn’t prevent them from calling themselves lazy. After all, other people have said it about similar efforts by other people. The same with worries about being called “selfish” keeping people from asking for accommodation,  or “drama seeking” when you report discrimination. None of these are legitimate statements, but they are all things that society’s attitudes attempt to legitimize through cultural means.

We feel these things as consequence. We feel that maybe we are lazy, maybe we are just bad people, selfish people. It is a difficult thing to stop thinking when things go bad. It’s hard to unhook those representations we see, the ones that tell us that failure is just because we didn’t do x enough. That we aren’t y enough for our struggle to be real, that we must be some sort of bum, drama queen, or whiner.

But it’s not true. We’ve lived, survived, a hostile world that would rather believe those things- that people like us must just be lazy fakes, that we are just bitchy people, that none of our reality is true. We’ve been raised in a culture that believes those things, we’ve had it ground into our minds.

Just because we resist doesn’t mean we don’t stilll have that thought in there. It’s been ground into us. Even those who come to life as a PwD later on, as it’s a societal thing, not an individualized thing. It’s a horrible thing, a painful thing, a thing that challenges us and makes us want to destroy parts of ourselves at some points of our lives.

We are real. And we don’t need to destroy ourselves. We don’t.

The medication I took earlier in an attempt to dismiss the brain fog is wearing down a little, as it doesn’t last too long, and soon I’ll be back in a place where the ideas are there where the words are not. I’ll read things and have feelings, but barely be able to come up with a way to say that I have them, let alone make a meaningful or thoughtful response. I’ll be able to put together other people’s points into meaningful words, but be unable to order my own points. And I will be frustrated at some point.

And I will survive it. Maybe I’ll come back to this, or you will, to remind myself, ourselves, what the self-doubts and self-flagellations really are- internalizations.

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6 thoughts on “A reminder from the fog

  1. A really fantastic post! This is something I struggle with a lot, especially since I don’t need to use a wheelchair 100% of the time, but could really benefit from using it at certain types where my energy is low, or I know I will be drained from doing too much. Yet, because I went from from being in the chair 90% of the time, to not at all, it’s really hard to go back to it, even when I really would benefit from it and be able to do MORE because of it. That’s just one thing I feel those of us with chronic illnesses struggle with. We aren’t paralyzed, and can still walk, but with lots of pain, fatigue, muscle spasms, weakness, etc.

    I also struggle with being able to put my thoughts and emotions into words. I always have, but with the addition of brain fog and exhaustion it’s that much harder.

  2. What about this scenario: when the thoughts and ideas were there, and the words in which to express them were also there, but TIME to write was not? We have not updated our own blog in months, because of that. And also what you discussed very articulately in your post. And yes it is oh so frustrating.

    Continue to push back against all the negative memes and other bullshit out there against us.

    BTW this is off-topic but the 1 year anniversary of the Occupy Movement is on Monday. We would certainly be interested in your thoughts on the possible intersection or overlap of the Occupy Movement and the Disability Rights/Self Advocacy Movement.
    Common themes, etc.

  3. That ground in thought sneaks up on me when I least want or expect it. Sometimes I don’t even remember to challenge it, I just feel the guilt. Then I have to list the things I have done today as if to justify why I haven’t done more. Great post, thank you 🙂

  4. Another idea: make maps when the fog prevents you from writing full sentences. Put an idea in a circle in the middle of a page and then draw lines connecting to other ideas that branch off the first idea. You might find free software online for that.
    Google “inspiration software” for an example.

    Question is would the maps make sense to you when you aren’t feeling foggy?

    Could be worth a try.

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