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disabledunitypunk · 18 hours

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So, I know this blog has been a lot less active as of late, at least from my part (mod Stars).

I'm gonna be honest; I've been incredibly sick. A combination of some kind of issue with gluten/wheat (may be celiac, or nonceliac gluten intolerance, or wheat allergy) with IBD, MCAS, lactose intolerance and sensory issues, had caught me in such a cycle of degranulation, anaphylaxis, intestinal issues, brain fog, chronic fatigue, and POTS and chronic pain flareups, that I was nonfunctional.

On top of that, anxiety over my partners SSI application (recently medically approved by the administrative law judge, that's a win! still waiting on nonmedical approval but it should hopefully just be a rubber stamp process at this point - knock on wood) has really screwed with my levels of executive dysfunction.

And trauma around medical neglect and abuse, plus being so sick, plus executive dysfunction, had led me to temporarily avoid seeking treatment at all. When I say that the very idea of trying to trick yet another doctor's ego into believing they came up with the idea to test me for the conditions I'm already reasonably certain I have, all while making sure I don't seem too smart, too unintelligent, too articulate, too reliant on google, too self-aware, use too many medical terms, and so on... I've not had the ability to advocate for myself anymore.

Luckily, a friend of mine that's all hellfire agreed to help advocate for me at some of my appointments going forward, so I'm going to be finding a new primary care doc and going forward (possibly seeing my old one a few more times if necessary, just to get re-referrals and maybe get a referral to a non-Medicaid allergist that actually knows what MCAS is) with pursuing diagnoses and treatment again.

Until then, however, I'm pretty much limited to about three foods - plain white or wild rice, "zoup" (a zucchini broth with chunks of carrots, daikon, celery, and wild rice), and raisins. I can drink water and cranberry juice. Between my sensory issues and that tiny list, I've been consistently significantly hungry for a week. I'm struggling to sleep and can't get more than four hours of restless sleep in a night the past few nights. I'm menstruating for the first time in five years for G-d knows why. I feel better and less reactive, especially after an ER visit for some IM decadron, but I am constantly exhausted.

Why do I bring all this up?

This is my daily life. I have near zero quality of life because of the ableism of doctors and failures of the medical system. I'm barely keeping myself alive every day, really only with the help of a lot of caretaking from my partner. I haven't been able to get to my doctor to get approved for that friend willing to advocate for me to be paid for basic caretaking duties by Medicaid. I went out on Saturday for the first time in over a month, and I'll be recovering from that for the next week and a half.

There is not a single minute of my life that isn't profoundly affected by my disabilities. Stress causes a cascading reaction through my MCAS, POTS, ME/CFS. Understimulation causes intense stress and even pain. Listening to music while doing nothing, watching videos, and similar "low energy" activities drain so much energy that they trigger my chronic fatigue, and sometimes cause a lesser reverse cascading reaction.

I can't take an ADHD med to help with the symptoms more disabling than the ones threatening literal anaphylaxis and organ failure because I can't get them compounded without an official MCAS diagnosis, and I'd also need a beta blocker compounded as well (which are are often mast cell triggers) for my POTS because the only ADHD meds that work on me are amphetamines.

I can't take vitamin D or B12 despite being incredibly critically low for the same reasons. I've barely found some OTC benadryl and aleve that I halfway tolerate. I might have a UTI and if I do I'm gonna have to convince doctors 20 years behind the medical literature that IM antibiotics are considered safe and effective and are a safer alternative to oral meds for me, if still risking a minor reaction.

On good days, I can make it between the bed and couch a couple times a day, and between the couch and the toilet. On bad days, I have a chamber pot setup in the bedroom because I can't afford diapers. I'm sure my vitamin D deficiency is not helped by never leaving an apartment that barely gets some sunlight two hours a day because it's in the shadow of the other side of the building.

I used to, on bad days, spend most of the day doing mindless tasks or on slightly less bad days, puzzle games, on my phone. Now, I'm lucky if I can do even that much most days. I AM too sick to play video games. 🥲 I can nap, I can sit with my eyes open, I can listen to music until it's too exhausting anymore.

I'm tired, and every day surviving is just a monumental effort. Again, the ableism of doctors and... actually, they're not failures if they're intentional; the abusive medical system, have not left a single minute of my life untouched.

Multiple times, when talking about online discourse, I've been accused of "wanting to be more disabled than I am", "being physically abled", being "crazy", "delusional", "on something", etc, etc, etc. All for daring to say that ideas like body-mind duality, exclusionism within disabled communities, and similar, are deeply harmful and affect far more than insular online discourse.

Doctors love to shove off chronically ill people into "psych cases". Have anxiety, autism, PTSD, schizophrenia, DID, depression, etc, etc on your chart? Yeah, you're never getting that physical diagnosis. This is what perpetuating and encouraging ideas like "all disabilities are physical OR mental", "people with abc type of disability have privilege over people with xyz type of disability", and so on, DOES.

Sanism is used to perpetuate ableism. Ableism is used to perpetuate sanism. Quite frankly, I'm not sure that neurotypical physically disabled people, non-mad neurodivergent physically disabled people, and physically abled neurodivergent/mad (all as self-identified categories) get just how deeply compounded ableism is when you exist at the intersection of physically disabled and neurodivergent (especially if mentally ill or mad). Or perhaps, the disconnect exists along a line of "profoundly disabled" vs "can access abled hegemony to a significant extent". Perhaps it's both. There is likely elements of how visible a disability is, how much its able to be masked, the type/level/spread of support needs, and so on. There's definitely elements of other marginalization; race, ethnicity, fatness, queerness, and so on.

And then there's the subcategories. Cognitively disabled. Traumatized. Chronically ill. Visually impaired/blind. Deaf/hard of hearing. Intellectual disability. Mobility disabilities. Fluctuating vs static disabilities, support needs, masking, and so on.

Sometimes I wonder, would the people who think I'm just an abled faker who doesn't belong for not being able to seperate my neurodivergence from my physical disabilities, my neurological organs from my body, my inabilities from my inabilities, would they find I'm the same as them when they spend a day in my life? Would they find it worse? Would they find it unbearable in a completely different way from their own struggles? Would they maybe even find that while it's not quite as hard as their own struggles in some cases, that it's still wildly hard and the two are far closer to each other on the scale than they think? Would they understand that we are both in the midst of an active, eugenicist genocide, and that we're 50-49 bullet holes staring down the barrel of a loaded gun that is held by our oppressors?

Even now, I'm thinking about how this post might be inaccessible. Is it readable for screen readers? Will the length be too much for way too many people? Is it understandable for people with intelligence and cognitive disabilities? How do I fix those things if it's not. What am I missing? What am I missing? What am I missing?

I'm exhausted, I'm scared, and I'm barely holding on. I'm safe, mental health wise, to be clear, I'm just convinced that the only reason that I'm not in significant danger from my physical chronic illnesses right now is because I've always had a body that was stubborn as all hell and twice as resilient. I'm not dying, not because the illnesses aren't trying, but because my body will endure far beyond normal limits.

I've experienced slow acting anaphylactic reactions without anaphylactic shock about once a month for 1-2 years now, usually only going in after several days and nights of severe symptoms. Like I've mentioned, several of my vitamin levels are so low as to make organ failure a constant threat. None of my illnesses are "terminal" per se, but that doesn't mean they can't be deadly. And more to the point, it doesn't mean they can't destroy me, that they haven't utterly destroyed my quality of life, without killing me.

I mean, I started this blog as an attempt at fostering solidarity. We CANNOT be quibbling over who really "belongs" in various disability spaces, who gets to reclaim what words or whatever, when so many of us are dealing with this shit.

For the area with the lowest cost of living in the country, SSI should be 5 times what it is now. For the highest, up to 20 times. People on disability benefits lose some or all of their payments, insurance, and so on, if they get married, even to another person on benefits. I've never met a disabled person without more doctor horror stories than diagnoses, and we all know diagnoses like to come in clusters. We are being abused, neglected, and killed.

I cannot stress how much, not that this intracommunity discourse "doesn't matter", but that it does at a deeply harmful level. It's just perpetuation of the abuse we face at a lateral level. We're mimicking the government and doctors and general abled society and getting into petty but deeply dangerous inane arguments that are just us carrying out the only way we've been taught to treat disabled people.

Being a disabled activist and advocate means questioning everything you know about ableism. It means prioritizing first and foremost disabled people. And honestly, speaking as someone whose platform here is dedicated to that, that's really fucking hard. It means believing people about their experiences with disability and oppression in a world that teaches us that the vast majority of disabled people are lying privileged fakers.

It means not believing that people know more about what people with a disability they DON'T have face because of their own disabilities. A little confusing, but essentially someone with disability A without disability B who faces oppression X, can't say that someone with disability B DOESN'T face oppression X, just because they face it. It means not calling the very real harm someone has experienced "misdirected", or making their suffering about you or your subcommunity, just because you've experienced the same or similar harm.

It means unlearning reactivity as a group of extremely traumatized people. It means learning to meet people where they're at, and assume "can't" rather than "won't". It means accepting that sometimes not only will someone's disabilities cause conflicting access needs with your own, but that sometimes people's disabilities can actively cause them to do harm, and that they still deserve rights, community, and support if they do. It also means recognizing that the harm that a disability may cause someone to do is going to look VASTLY different than abled expectations of "harmful" disabilities. It means, even and especially when this happens, recentering the perspective not around how the disability affects other people, but around how it affects the person with the disability.

It's all of this and so much more. It's a lot of effort from people with not a lot to give. It's fighting an upstairs battle with no ramp, so to speak.

And I guess I just... I'm at a loss on how to keep that up. Is just focusing on getting myself well enough to participate again, putting my own mask on first, enough? When there is not a single moment of my life untouched by the extremely deep and extremely systemic harm of ableism, is it enough to try and access the care continually gatekept from me at an individual level? Can I even do so, against such intensive pressure?

How do I live this life, and also go on untangles the narratives of "disabling neurodivergence isn't really a real disability and neurodivergent people face almost no real ableism" and "physical conditions are obvious and so get all the care and face no real ableism". How do I fight the concurrent violences of hypervisibility and erasure within the community that only serve to strengthen abled people bludgeoning us with them?

How do I focus on things like organizing, community building, activism, advocacy, dismantling the system, dismantling our reliance on it, and so much more, when I can't even get out of bed?

All I can do is write about it, right now. Sometimes I feel like that's all I've ever been able to do. Everyone I've ever known has acted like some day my "pen" will be a tool of liberation, but I'm at a loss for how. I'm just some horribly sick mad cripple on a dying microblogging platform on the internet. I don't know - not if I'm enough, but if anything ever can be.

And I don't mean to sound hopeless. I know that change can happen. I know that it is, in tiny and sometimes larger ways, every day.

This is kind of a self-centered post, in the most neutral way. This is just my perspective. This is about me, and how I'm so very disabled, and how people assume I'm not (and how wild that is, considering), and how ableism affects me so deeply, and how I don't know how to face it or fight it...

I can only hope that maybe my word resonating with people means something. That maybe, as much as we never want each other to experience what we have to, that it's also a comfort to know we don't experience it alone. That maybe this will serve as a reminder that it's okay to be scared, to feel lost, even hopeless, to struggle; to not know how to fight or where to turn. That maybe this will reach someone who CAN do something, and maybe it'll reach the people who need to NOT do anything other than take care of themselves, and that maybe it will help both of them.

Maybe that's too grandiose, I don't know. I hardly know what my point is here, other than: this is me, crippled and crazy as all hell. This is the violence I face. This is why I started this blog, because we need to stop hearing "you're a lying abled privileged faker trying to take advantage of and take resources from real disabled people who really need it" from abled people, and saying it word for word to each other. Because what abled people mean by "real disabled people" is just a theoretical disabled person. A perfect victim. They don't mean any real disabled person, especially not those who can advocate for themselves. They mean they think every single one of us doesn't need or deserve accommodations, treatment, respect, humanity, or even life.

That's the point, really. We're all we've got. We've gotta fight for each other, not fight each other. And G-d, I know how hypocritical that sounds coming from my ragey, rabid ass. I just... that's all I know to focus on right now. Not necessarily all coming together and holding hands and singing a song about unity, but just... not being ableist to each other. Tolerating each other even if we can't stand each other. Presenting a united, unbroken front to ableist society, and pushing until they don't have any power over us anymore. Doing the work of activism, which is often neither easy nor feel-good.

That's what I'm trying to do here, at least. I try to get a little better at it every day. I try to listen a little more. I try to keep up hope when my body and mind are crashing down around me.

I don't have a mic-drop conclusion to add to this, so just: I'm opening the floor. Anyone who has anything to add, feel free to do so. What you have to say is valuable.

#ableism #sanism #unitypunk #cripplepunk #madpunk #neuropunk

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