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Making the stigma external
Aug. 4th, 2023 10:46 amMy whole life I've had to either make meaning and take value from how I'm different, or hate myself. Luckily my PDA largely rejects society's demand to only be one way so I've missed a lot of the internalized loathing a lot of people have. I've had a couple bouts with it, of course, but the lever of "if I'm happy, who dares tell me I shouldn't be?" has been a strong one.
Most of that work was done in regards to polyamory ("if you really loved me you wouldn't--" was the stuff I had to reject), what I now know was PDA and autism ("to be happy you should--" and "your emotions should look like--"), PMDD ("you should respond emotionally consistently to situations"). Gender stuff honestly flew mostly over my head though I'm still working on trusting femme-type people to give clear consent/non-consent in sexual and romantic situations.
In all of that it's basically come down to believing I have a right to exist the way I am, and that as long as I'm not harming folks by doing so that's really, genuinely ok so any societal pressure, internalized or channeled through humans or human systems, is just fundamentally misguided. It's not necessarily malevolent, it's just... not correct.
Folks have differing opinions on whether autism is a disability. I'm leaving that discussion for right now.. I was going to say that PMDD is "arguably" a disability, but I think that's just because I've successfully dealt with the stigma internally-- something which significantly limits the things our society expects you to be able to do. In the case of PMDD it was recurring, and though I could manage it through planning it did limit things like when I could work, when I could do relationships, sometimes when I could drive, etc. It "felt normal" because I was good at managing it, but it was limiting.
And here's where my internalized stigma comes in. There's a stereotype of disabled people as being unhappy because of their disability or else having to work really really hard to overcome the disability, that is to do the things anyhow, if they want to be happy. I basically haven't been thinking of myself as being disabled, because I enjoy my life. There's also the background concept of relapsing/remitting not being a "real" disability.
So now it's been several months that, as I've said, my capacity is significantly lowered. This doesn't mean I can't do things. It means I can do less of the things I'm used to, and less "active" and "thinking" stuff. It's easy to think of this as doing "more nothing" but I've always rejected that paradigm. There are the same 24 hours in a day. The time still exists, and a narrator could still describe my activities during those times. The activities may just be different, things like lying in a hammock feeling the weight of my body, the softness of a blanket, and listening to birds or resting on the sofa with my head and legs propped up and being sat on by a cat while petting him intermittently. Those aren't "nothing" unless I discount my life's value during those times, and I'm not about to start discounting my life's value now.
So let's say my capacity is altered. Either way I objectively spend all this time lying down, hours and hours a week more. Kind of even hours a day more. This is what stereotypical disability looks like, lying in bed. And that clashes with my internalized idea that to be disabled means I can't do things I want and that I can't be happy.
I am, most certainly, still happy. Some days I chafe at not being able to do as much but not as often as I expected. I do slow pieces of things. I prioritize. Not everything gets done but it's normal for not everything to get done in my life: that's why I make activity menus instead of todo lists. I skim off the things I want to do in the moment and do them, the things that are most important for my self to enjoy later on and do those, and the days are still full and pass like jewels on a necklace. The soft feeling of my cat is a much different experience from digging a garden bed but it's just as much a gift of sensation given to my body. Breathing, particularly, has been uncomfortable but it's layered with these other types of comfort: of watching the light move day after day, season after season, across the walls of my home. Of watching my tomato hand-crosses swell. Of having creatures that light up because they love so much that I exist.
And I most certainly objectively fit some sort of definition of disabled, at this point. 13-16 hours in bed a day seems a requirement, I can carve it out of one day or two days, but then I need to make it up. If I make it up promptly I don't suffer and I find things to enjoy. If I push it off too long it gets into significant discomfort, from being tired to being dizzy and disoriented to having intense headaches and body stuff to, eventually, my body just not moving sometimes when I try to make it move.
I can feel internalized ableism telling me I should suffer. I should be unhappy because of these limitations. I should just stop doing things because I can't do some things, or as many things. Particularly my day paddling with my co-worker and then doing a day of fieldwork, those feel like if I want to consider myself disabled that I should not do any of those things. I did those things. I'm learning: I bought pre-made food for meals, I fed the animals twice as much so I could go straight to bed the next day, I skipped changing the sheets and showering one of those days, I didn't even go near the garden so I wouldn't get drawn into it and away from resting.
And it was fine. I juggled my priorities, as I've been doing all my life, I took lots of rest, and I'm fine.
Disability doesn't feel like an identity to me. It feels like a description of the mismatch between the society's expectations of me and the way I exist within the world. It's not on me but is instead on society's limited ability to understand and support my self, and the selves of other people I know. It's like, I don't know, someone starving while standing next to a field of camas or potatoes: the issue isn't the plants, it's the people who don't know how to appreciate the plants.
There are so so so many strings from this set of thoughts to how I think about autism and also interpersonal stuff generally, but I'll leave this here for now.
Most of that work was done in regards to polyamory ("if you really loved me you wouldn't--" was the stuff I had to reject), what I now know was PDA and autism ("to be happy you should--" and "your emotions should look like--"), PMDD ("you should respond emotionally consistently to situations"). Gender stuff honestly flew mostly over my head though I'm still working on trusting femme-type people to give clear consent/non-consent in sexual and romantic situations.
In all of that it's basically come down to believing I have a right to exist the way I am, and that as long as I'm not harming folks by doing so that's really, genuinely ok so any societal pressure, internalized or channeled through humans or human systems, is just fundamentally misguided. It's not necessarily malevolent, it's just... not correct.
Folks have differing opinions on whether autism is a disability. I'm leaving that discussion for right now.. I was going to say that PMDD is "arguably" a disability, but I think that's just because I've successfully dealt with the stigma internally-- something which significantly limits the things our society expects you to be able to do. In the case of PMDD it was recurring, and though I could manage it through planning it did limit things like when I could work, when I could do relationships, sometimes when I could drive, etc. It "felt normal" because I was good at managing it, but it was limiting.
And here's where my internalized stigma comes in. There's a stereotype of disabled people as being unhappy because of their disability or else having to work really really hard to overcome the disability, that is to do the things anyhow, if they want to be happy. I basically haven't been thinking of myself as being disabled, because I enjoy my life. There's also the background concept of relapsing/remitting not being a "real" disability.
So now it's been several months that, as I've said, my capacity is significantly lowered. This doesn't mean I can't do things. It means I can do less of the things I'm used to, and less "active" and "thinking" stuff. It's easy to think of this as doing "more nothing" but I've always rejected that paradigm. There are the same 24 hours in a day. The time still exists, and a narrator could still describe my activities during those times. The activities may just be different, things like lying in a hammock feeling the weight of my body, the softness of a blanket, and listening to birds or resting on the sofa with my head and legs propped up and being sat on by a cat while petting him intermittently. Those aren't "nothing" unless I discount my life's value during those times, and I'm not about to start discounting my life's value now.
So let's say my capacity is altered. Either way I objectively spend all this time lying down, hours and hours a week more. Kind of even hours a day more. This is what stereotypical disability looks like, lying in bed. And that clashes with my internalized idea that to be disabled means I can't do things I want and that I can't be happy.
I am, most certainly, still happy. Some days I chafe at not being able to do as much but not as often as I expected. I do slow pieces of things. I prioritize. Not everything gets done but it's normal for not everything to get done in my life: that's why I make activity menus instead of todo lists. I skim off the things I want to do in the moment and do them, the things that are most important for my self to enjoy later on and do those, and the days are still full and pass like jewels on a necklace. The soft feeling of my cat is a much different experience from digging a garden bed but it's just as much a gift of sensation given to my body. Breathing, particularly, has been uncomfortable but it's layered with these other types of comfort: of watching the light move day after day, season after season, across the walls of my home. Of watching my tomato hand-crosses swell. Of having creatures that light up because they love so much that I exist.
And I most certainly objectively fit some sort of definition of disabled, at this point. 13-16 hours in bed a day seems a requirement, I can carve it out of one day or two days, but then I need to make it up. If I make it up promptly I don't suffer and I find things to enjoy. If I push it off too long it gets into significant discomfort, from being tired to being dizzy and disoriented to having intense headaches and body stuff to, eventually, my body just not moving sometimes when I try to make it move.
I can feel internalized ableism telling me I should suffer. I should be unhappy because of these limitations. I should just stop doing things because I can't do some things, or as many things. Particularly my day paddling with my co-worker and then doing a day of fieldwork, those feel like if I want to consider myself disabled that I should not do any of those things. I did those things. I'm learning: I bought pre-made food for meals, I fed the animals twice as much so I could go straight to bed the next day, I skipped changing the sheets and showering one of those days, I didn't even go near the garden so I wouldn't get drawn into it and away from resting.
And it was fine. I juggled my priorities, as I've been doing all my life, I took lots of rest, and I'm fine.
Disability doesn't feel like an identity to me. It feels like a description of the mismatch between the society's expectations of me and the way I exist within the world. It's not on me but is instead on society's limited ability to understand and support my self, and the selves of other people I know. It's like, I don't know, someone starving while standing next to a field of camas or potatoes: the issue isn't the plants, it's the people who don't know how to appreciate the plants.
There are so so so many strings from this set of thoughts to how I think about autism and also interpersonal stuff generally, but I'll leave this here for now.
