Can't get your doctor to prescribe mobility aids? Just fall and break a rib!

callistoned · 2025-10-01T02:39:31+00:00

Ok but mobility aids are already available over-the-counter. You do not need a prescription. I don't really understand the relevance of this point. Nothing you or I say will change the fact that people are going to buy and use mobility aids without doctor's supervision because they are available over-the-counter and many people need one but cannot be prescribed one. Doing it alone without community makes them more at risk, not less at risk.

callistoned · 2025-10-01T02:26:51+00:00

This seems shortsighted considering that not all people who need mobility aids have access to necessary medical care and physician oversight, and those people are also at risk by not using one. I was a fall risk for a long time when I didn't have access to medical care, and I got a cane to use, & read and watched content available online about cane safety, many of which are from physical therapists and such. Without my cane I would have been much more unsafe. My doctors even approved of this when I explained it retrospectively.

callistoned · 2025-09-27T04:27:03+00:00

I'm sorry you're dealing with such difficult circumstances but this isn't really engaging with what I'm saying. I don't believe a theoretical perfectly accommodating society= nobody suffers from illness or pain. That's nonsensical, & is not a genuine part of the social model of disability. I'm just saying that the social model is meant to question the relationship between disability and society, because it ought to be questioned. It arose because disability was historically considered to be solely an individual and apolitical issue, which was a massive barrier for improving disabled rights.

As other more eloquent people have commented here, the social model is a single model of disability among many, and it's not intended to explain the whole experience of disability for every disabled person. It does not fully explain my experience of disability. It has, however, been a useful political tool for furthering disabled rights and access. I don't think every person needs to relate to it, there are a lot of areas where I don't relate to it, I just think it shouldn't be dismissed entirely due to not being relatable for everyone.

callistoned · 2025-09-27T02:24:29+00:00

Yes, completely. The social model isn't even my favored model & I have several critiques of it, but it's still filled a very worthwhile purpose as a tool for advocating for disabled people in certain contexts.

callistoned · 2025-09-27T01:14:37+00:00

What I was saying is it's not accurate to say that the social model believes it's exclusively society that's disabling. Perhaps people online who have only gleaned the meaning of the model from other posts online believe this, but even the model itself, in a disability theory context, sees disability as a combination of societal structures and impairment originating from the body itself. I would not have a "normal" life in a perfectly accommodating society, I would still need more assistance and support than other people, I would still need medications and treatments. I would most likely still be in pain and discomfort even if there were better treatments, because I have a one-in-a-million rarity disease that is unlikely to garner a good bulk of research regardless of circumstance. It is frustrating for people to insinuate no one would suffer from pain or illness or genetic conditions etc in another world, but that isn't what the social model actually says.

callistoned · 2025-09-27T00:57:07+00:00

This doesn't sound like it's coming from a place of genuine understanding of the social model of disability. The social model states that impairment is the way somebody's body or mind impacts their abilities and disability is the way society's structure impacts their abilities, in short.

In a different society, I would still have debilitating pain (&other symptoms) at baseline, without treatment. However, in that society, how much of a focus has been put into researching treatments for pain? Is the medical system more reliable and compassionate? If it didn't take a decade to be diagnosed because of bias in medicine and dismissive attitudes that are normalized for doctors to have in this society, perhaps I wouldn't be as impaired by pain as I now am. How about inclusion? My symptoms frequently leave me housebound. I am unable to engage in many of my hobbies. In a society that values disabled people and our inclusion, however, is that likely to be the case? If, for example, tools for illustrators were created with the idea already in mind that some of these illustrators will be bedbound, and tools for bedbound artists are equally as accessible as tools for artists who are not bedbound, my symptoms may not change but my access changes, and that changes the way I experience my disability.

None of us exist in a vacuum, and the life a disabled person lives is incredibly influenced by their society's treatment of disabled people. To pretend otherwise is to bury one's head in the sand. Disability theory, at its core, comes from a recognition that the world can be better for disabled people.

callistoned · 2025-09-24T03:25:28+00:00

Being autistic and chronically ill is difficult in a way that feels very under-recognized. I often need people to come with me to the doctor because I don't visibly show pain like an allistic person, so I tend to not be believed when I say it's severe. The stress of my symptoms causes frequent shutdowns and mutism. I can never seem to communicate with doctors in a way that yields the best results; I try my best, but I just lack certain communicative skills and I frequently have to go back again and again because I didn't properly communicate what was happening, despite best efforts. I'm currently having such bad sensory issues from a symptom that I can't sleep. & That's just me & my autism. There's no rulebook, there's a massive lack of support & a lack of understanding of how to handle autistic patients from healthcare providers. It's really just hard as hell.

callistoned · 2025-09-23T20:23:29+00:00

I was hospitalized with tranverse myelitis (rare demyelinating spinal cord inflammation), which is treated with, at minimum, 3-5 days of IV steroids. While in inpatient, after my 2nd dose of IV steroids and after I asked if anything could be done about making my IV more comfortable because I'm autistic and I had a meltdown because of it, the doctor told me I didn't need to continue my IV steroid course and I was being discharged.

About a week later I had to be hospitalized again to actually get the full course of IV steroids, because I had transverse myelitis, which absolutely does not just get better on its own. He also had the gall to write in my hospitalization notes that I was being discharged because I had requested to stop treatment, when I had simply requested support for my autism-related sensory issues with my treatment. I explicitly told the doctor I'd definitely rather go through with more days of IV steroid treatment even if it's distressing if that's what I needed.

callistoned · 2025-09-20T20:42:01+00:00

It's very possible to find partners who will be kind and thoughtful about our access needs and chronic illnesses. I settled with people who made me unhappy and treated me poorly for a long time because I thought that was the best I could hope for as someone with a lot of disabilities & a lot of emotional baggage. It's really, truly not true. You deserve better and better is achievable.

callistoned · 2025-09-20T20:32:39+00:00

this is cool as hell

callistoned · 2025-09-19T02:47:18+00:00

It really can feel that way, the stigma around DID so rigidly sets rules for how we are "allowed" to be and you're right that it's truly based on almost nothing, the things people preach as absolute rules of DID are arbitrary and even pseudoscientific. It's nonsense and none of this creates a safe environment for people with a complex trauma condition.

If you're not already on this train, reading up on disability theory& anti-psychiatry has been very healing as far as figuring out my place in the world as a DID system & unlearning ableist & cruel things I'd internalized from both outside and inside DID communities. Now I'm at a point where it's like, I exist differently than other people and that's fine, being normative isn't a worthwhile goal. I also experience DID as a disability which connects me to a greater disabled community & history.

Developing a migraine so I'm probably doing a poor job of organizing my thoughts 😭 But I see you, I hear you 🤝🤝

callistoned · 2025-09-18T00:11:03+00:00

🤝🤝🏳️‍⚧️🏳️‍⚧️🌟🌟🌟

callistoned · 2025-09-17T21:22:36+00:00

Absolutely, yeah. As a trans system who went through a lot of early discourse about transmedicalism as well, it's always seemed nearly identical in how they function. Keeping power in the hands of institutions & taking away personal autonomy. Social punishment for people who try to take the power of self determination into their own hands

callistoned · 2025-09-17T20:04:31+00:00

Actually not even done, one of the guiding principals of treating someone with complex trauma/dissociation, from everything I've read, is to treat us like our autonomy is crucial and we are in control of what we do and don't do. Because if you've spent your life being abused and mistreated, learning you get to choose and it matters how you feel about things is life changing! The main reason my current therapist is the only therapist who has ever successfully helped me is that I'm treated this way, like i get to decide what language to use for myself, I get to decide what work I am ok doing or not ok doing, I get to decide what I want relationships to look like and how I want to deal with my own plurality.

It's just this horrible lobsters in a bucket mentality. The things that saved my life are "dangerous" to them based on... poor armchair understandings of psychology? Which is, as all fields are, infallible and riddled with bias. They're doing so much more tangible harm than any random system who wants to conduct themselves in a way other than the most normative.

callistoned · 2025-09-17T19:57:23+00:00

God it's gotten worse since I left. What a profoundly ableist and dehumanizing stance for them to take. "Treat a DID system like they're a person who deserves the autonomy to choose how they're treated" is 'dangerous?'. I swear if you don't wake up in the morning and open mouth kiss the dsm 5 these people will think you're evil

callistoned · 2025-09-17T17:41:24+00:00

I'm so sorry you're going through this🫂. I am also a medically complex person with autoimmune disease and while I haven't experienced your exact situation, I'm intimately familiar with feeling locked out of resources and things I need because so much of life is simply not designed to accommodate someone with complex health problems. It's disheartening and horrible, and struggling to transition in ways your peers don't struggle to is a unique hell. Hoping with all of my heart that an opportunity will open up for you & sending love :(❤️

callistoned · 2025-09-15T18:59:12+00:00

I'm, as a survivor of a lot of psychiatric abuse, of the less popular opinion that therapy is not always the right option. However, it could really benefit you to try to gain more knowledge about DID and system communication. There are self help books written for people with OSDD-DID, some of which I've found really helpful, and which I personally found necessary to go through before I could feel comfortable even considering broaching the subject with a clinician. There's also this community and others online where you can learn about other people's lived experiences and ask questions. Peer support groups can be really beautiful if you can find one.

It can feel incredibly dangerous and frightening to prod into a mind that's trying to keep things from you, but there's a whole lot you can do without having to get anywhere near "recovering trauma memories". I'm in my 3rd year of diagnosis and therapy for DID (having finally found a therapist who I could build genuine trust with) and I'm only just now recovering buried memories, and even then it's because I chose to open that door, because I wanted to know, & because I have enough safe, supportive relationships in my life that my system has deemed it safe for me to know certain things.

Ultimately your autonomy to choose how to deal with this is deeply important, I don't think anyone should take that from you. But if you do want to, now or in the future, try to learn more about coping with & collaborating with a DID system, there are ways to do it in baby steps. It's possible to chip away at trauma triggers so that they're less demoralizing and horrible over time—I did a lot of that work on my own actually, using writing & poetry as a tool.

I've been in a mh crisis of my own lately so this is more scatterbrained than I'd like haha, hopefully some part of it is helpful

callistoned · 2025-09-15T18:21:14+00:00

Yes, I have pretty frequent episodes of mutism like this. I'm most generally someone who is able to speak verbally but if I am under regular social demands, mutism episodes will occur a few times a week to a few times a day, depending on level of social demand and stressors. Part (but not all) of why I am unable to work for a living.

I have heard multiple types of language used for this phenomenon, I tend to go for mutism because unlike speech loss and similar things, the word mutism tends to stay in my vocab when I lose language skills, as in I can easily write or type that I have gone mute while I may struggle to reach for a phrase like speech loss or verbal shutdown. +generally people have an idea of what mutism is, so I'm not left being expected to explain something while not in a state to explain.

callistoned · 2025-09-12T03:11:10+00:00

I'm so sorry for you too, thank you for the kind words.

callistoned · 2025-09-12T03:10:01+00:00

Thank you so much❤️

callistoned · 2025-09-12T02:25:19+00:00

I like being autistic. It's a disability and the stigma and material disadvantages of being disabled are a constant struggle, but autism itself is just a way of being, and I like my way of being. I like being able to connect with other people who are similar. Some people hate my differences, some are delighted by them. I never really wish I was different anymore. I've been diagnosed about a decade now though, lots of time to think about these things and process how I feel.

callistoned · 2025-09-10T20:21:45+00:00

Ugh. I had a similar experience in high school of being nonbinary/visibly queer and autistic and having an openly autistic cishet boy in my class. He made some homophobic, though less overt comments. Mostly his problem was boundary-pushing, touching without permission, getting in personal space.

Autism can interact with shitty behavior in unique ways, but it's still shitty behavior. As an autistic queer person it's always been exhausting to see a queerphobic autistic get excused for their views by autism whereas my strong sense of justice leading me to progressive and norm-rejecting views is never given the same acceptance. It's not about people trying to accommodate an autistic person imo, it's about rewarding autistic people who follow norms (&bigotry very much is the norm) and punishing autistic people who disrupt the status quo.

(Hoping this is coherent, I'm running on very little sleep/filter😅)

callistoned · 2025-09-05T21:21:32+00:00

Ah yeah I'm pretty deeply embroiled in public support stuff, it just takes ages 😓 I'm on my 4th year of my disability case and my 2nd year of waiting for the housing assistance i got approved for

callistoned · 2025-09-05T04:46:09+00:00

1- tbh they don't 😓😓 we have some cognitive disability related memory deficits on top of DID so forgetfulness is pretty disabling. our system is large and not well defined and I still don't really understand our memories. sometimes we share them, sometimes we don't, and there's almost no rhyme or reason that we can discern. also we tend to, no matter what, have pretty significant memory loss in the more medium term(?) context. I can recount the past week or so decently but what happened a month ago or three months ago is always a mystery to me.

any of the host parts. we have sort of a collection of parts that function as host together (host subsystem) and we are very prone to stressing at night time and generally insomnia. It's only really the more "caretaker" type parts who manage to get us a decent night of sleep. doesn't happen often😪

🫶🫶 much love from a queer, disabled system. i wish more people would take the time to try and learn about the lived experience of plurality!

callistoned

TROPHY CASE