dippy's disability blog

21, she/her ✿ physdis awareness ✿ dysautonomia, asthma, mtd, + more

[disabled-dippy]

blog intro ✿

heya! my name is dippy, and welcome to my blog! I'm going to use this blog to talk about things like accessibility, signs/symptoms of certain disabilities, tips for navigating said disabilities, and sharing my own personal story.

my primary dx is acquired dysautonomia (NOT POTS). My abilities fluctuate a lot, but I’m fortunate that most of the time I am able to at least get around in some capacity. my other major condition is chronic asthma. I have other disabilities but they won’t come up much so I won’t list them.

I am very passionate about disability rights and activism. this page is exclusively dedicated to all topics surrounding disability. I will not be discussing other things here.

IMPORTANT NOTE: PLEASE do not try to armchair diagnose me with anything. This includes saying things like “have you gotten checked for this condition” or trying to say my symptoms are probably due to a particular condition.

I do not have autism, I do not have ADHD, I do not have POTS, I do not have any form of EDS (especially hEDS) or HSD, I do not have MCAS, I do not have GP, I do not have ME/CFS.

People constantly try to tell me or imply that I have these conditions. I do not. I have been tested and evaluated numerous times. I have general dysautonomia and a few associated conditions that are not listed above. I do not appreciate people trying to play the role of my doctor. I know that comments like “I think you have this condition” are typically well-meaning, but I assure you that I do not have any of the conditions listed above, so please do not try to tell me I do. Thank you.

I also do not want your unsolicited advice. Please only give advice if I specifically ask for it.

If there is a treatment out there for any condition I have, odds are I have tried it.

[lifeafterpsychiatry]

"Clearly I wasn't talking about disabled people-" yeah part of the problem is that the existence of disabled people just isn't considered in your worldview like that's the problem we're criticizing not a get out of jail free card

[la-vie-en-lys]

No, that's not the problem. Not everything is relevant to disabled people, nor does it have to be.

[lifeafterpsychiatry]

Disabled people are the world's biggest minority group and a part of every other marginalized community. Thinking that you can do progressive activism without ever engaging with the subject of disability is in fact a problem

[fangirlinginleatherboots]

some things that horror movie culture has taught you are scary…. are just ableist

[artishroom]

….clarify?

[fangirlinginleatherboots]

okay sure. psychosis? scarier to have than to know someone who has it. DID? im more a threat to myself than people around me. wheelchairs and psych meds? are tools that help people live more functional and flexible lives and are not judgments of the persons character and for sure are not scary things. and for real, intellectually disabled people are not threats, but movies love to make them villains because they act different and understand the world differently. and people with notable physical differences? people who’s bodies look different? people with scars, growths, amputations, etc? are literally just people. and seeing themselves painted like monsters on the big screen is absolutely sickening and damaging to how society will see them.

its not only bad writing but its extremely harmful to people who actually live with conditions that are misrepresented in media. when i found out i had DID, my mom freaked out because her only point of reference was Sybil. when i was younger and first went on psych meds, i thought it meant i was set on a track to be a bad person, because in so many movies and video games you find out the bad guy has medication in his bed side table for some sort of psych disorder. the worst thing a hallucination has ever made me do was wake my mom up at 3 AM to check my bathroom to see if the bugs i saw everywhere were real and the worst thing an “episode” of any sort has made me do is hurt myself. my ptsd doesnt make me kill people, my alters dont kidnap people, my autism doesnt make me so morally unaware that ill murder for senselessly, my ocd doesnt make me hurt people etc etc etc

literally the only “horror” is the ableism. and the only way you can write good horror about disability and mental illness is if the focus is on how society and the medical field treat us rather than focusing on how we are apparently so scary, threatening, and bad.

[quiet-reassurance]

Horror is and has historically been an incredibly ableist genre, and it is still largely unrecognized as such. This has genuine severe and real-life consequences for disabled and neurodivergent people in real life. Please keep this in mind if you are abled and/or neurotypical.

[queerasaurus-rexx]

also asylum horror is deeply ableist.

oftentimes an asylum is much scarier for people who need to be there. surprise! you’re considered incompetent, so no one while believe you if you report abuse. so those doctors can really do anything to you.

[timmy-tuffknuckles]

@this-is-ableism

[this-is-ableism]

this is ableism.

[hazedxg0]

It really does say a lot about how romanticized and theatricized alters are online when people go into denial or feel isolated for displaying the most textbook DID/OSDD symptoms.

Not knowing who's fronting, not knowing how many alters you have, not knowing when you switch, not knowing alters' names or why they formed, alters not having names, having no internal world or a very vague one, having no internal communication, struggling with external communication, experiencing alters as different overlapping states of self instead of separate people, hell even just experiencing amnesia.

These are all extremely common symptoms of DID/OSDD, especially when you're untreated or early in treatment. And yet they're all common reasons for why people feel like they don't belong in this community, because the reality of this disorder somehow doesn't conform to the online expectation.

How bad is the state of CDD awareness, even among those who proclaim to have it, that the most common manifestations of DID/OSDD are so underdiscussed that the majority of people with these conditions cannot find understanding even in a community meant for their disorder? When anything that doesn't play into the "alters are separate people and friends in your head" narrative is ignored and erased?

[disabled-dippy]

Long ass rant incoming:

I recently started my clinical working with very high support needs autistic kids. This is not the first time I’ve worked with disabled students, but this is the first time I’ve worked so in-depth with them. I’m interacting with them for 7+ hours a day, constantly talking to them, helping them learn and develop new skills, taking them to gym and art and all sorts of other things. And this has really solidified the belief I have that 99% of neurotypical who think they know the first thing about autism do not know a damn thing about it.

There are so many people who are literally raging hate campaigns against literal children just because they’re autistic. “You just don’t get what it’s like having to parent them,” “they’re so difficult,” “they can never learn,” “they can’t contribute anything to society,” “they’re missing something inside.”

None of that is true in the fucking slightest. I knew this before, but it has become INFINITELY more apparent. My heart hurts for these kids because it’s so obvious sometimes that people have never even tried to get to know or understand them. They think there’s nothing going on in their heads, that they’re incapable of love, that they can’t learn, meanwhile these are some of the smartest, kindest, and most caring kids I’ve ever been around.

Yes, HSN autism has its challenges. Yes, it can be hard to parent or teach a child with profound needs. Yes, they often need much more attention and care and need help with things their allistic peers do not need help with. But to say that they are incapable of love or learning or that they are “missing something” is completely fucking untrue.

If they are incapable of showing love, then why do they notice when the teachers are upset? Why do they hug us? Why do they offer us their snacks or their treasured toys or stuffed animals? Why do they become distressed when other students are crying and try to help them? Why do they run to us in the mornings and cry at dismissal?

If they are incapable of learning, then how did they learn to use felt boards and AAC devices and sign language? Why are we constantly updating their learning goals because they keep hitting them? Why are they able to learn all the routines we have in the classroom?

I feel so much empathy for these kids because I know life’s been hard to them. I can see it on their faces, in their body language. I can tell that their boundaries have been repeatedly violated, because they are shocked when we listen to their discomforts and their fears. They expect us to keep pushing on with their lessons even when they are upsetting or cause them pain.

We regularly pause when we notice they’re distressed or distracted and it’s clear that they don’t expect us to. If I could describe to you the shock that one student experienced when they said they wanted to play during a lesson, and we found the time to let them play instead of pushing on and insisting it was learning time. Another student cried while we were brushing their hair and was shocked that we took that as a cue to stop and give them a break and let them play with their comfort toy.

We’ve stopped so many meltdowns just by giving students the chance to communicate what is bothering them. People complain that meltdowns are unavoidable, but then they don’t take the time to give the person the opportunity to communicate or try to figure out what’s bothering them. I’d say we avoid a good 80% of the potential meltdowns in our classroom literally just by understanding that these are kids with complex needs who just want a way to communicate what’s wrong.

It just makes me so mad that people cannot see this and think the autistic label means kids are irreparably damaged or some stupid shit like that. Treating these kids like actual human beings is an alien concept to most people. We’re not “miracle workers” or “breaking through the autism” or whatever other ableist bullshit people try to claim. We’re just treating these kids like normal fucking people.

This shit pisses me off so bad. Protect autistic kids (AND autistic adults), especially HSN autistics, because they are so so vulnerable and the world hates them for existing.

[lucy-sweats-love]

One of my first days of medical school, we had a session about communication where we were presented with a hypothetical: we were the sleep medicine doc, and our patient is a 7yo autistic boy who keeps waking up at night very distressed but cannot tell you what he needs. He is with Mom in our office, and mom is frustrated. The waitlist for autism-specific services is several months. What questions do we ask, why do we suggest?

My peers focused in on Mom. Is she supported at home? What can we do to support her?

Mom. Not the kid.

So I raised my hand and was like… has anybody tried a communication board? Maybe he wakes up because he has to use the bathroom. Or maybe he’s cold and needs extra blankets. Maybe he’s hungry. Maybe he’s had a nightmare. We don’t know, and maybe the priority should be to find a way to help him communicate his experience. Even a laminated piece of paper with a few options for what he needs: pictures of a toilet, blankets, a snack, a book, cuddles, etc.

The way these other students don’t even think about the actual patient in this scenario because he was nonverbal was mind-boggling to me.

I’m autistic myself, albeit low support needs. I worked in pediatric psych in inpatient and residential units, primarily with kids ages 3-12, including high supports need autistic kids and kids with limited access to spoken language. Of course parents need to be better supported, and many of the kids I worked with were hospitalized because the parents didn’t have the social supports needed to support their child themselves. But we can’t forget that the disabled person is also a person. Non-disabled people get frustrated when they aren’t listened to, when their agency is removed, when they’re overstimulated, so why do we expect disabled people to be able to manage the frustration of having their needs constantly ignored? How can we expect them to thrive if we are ignoring their attempts to communicate with us? How can we teach them anything, how can we meet their needs, if we are unwilling to communicate with them?

If you listen and given autistic kids the tools they need to communicate, you’ll find out they have a lot to say.

[disabled-dippy]

This makes me so incredibly frustrated and sad at the same time. Why do people have so much empathy for the “heroes” who raise disabled kids, but absolutely NO empathy whatsoever for the kids themselves??

How do you look at a living, breathing, human being and decide that they are nothing but a burden? How are you so ignorant and so insistent that they are more trouble than they’re worth that you look directly through them and miss everything about them? How do you decide that the child’s opinions and voice and needs don’t matter, just because they are disabled? Why do the feelings of the parent always supercede the feelings of the child?

Also, a little aside that is related to this discussion & to my job: one of my students’ parents forgot to send her AAC in with her to school the other day. She just. Didn’t send her backpack in with her. Didn’t let us know ahead of time, didn’t send an email, didn’t try to bring the bag in despite us reaching out and asking. She just. Didn’t send it in.

So this student had no way to communicate effectively the entire day. She had no voice, no way to express her needs and wants. She got rightfully upset when we couldn’t tell what snacks she wanted, because she has trouble with expressive language and couldn’t pick out the ones she wanted. She completely shut down because she had no way to tell us when she wanted a break, or when she was overstimulated.

She had to rely on an old, worn-down felt board the entire day that didn’t have any of her preferences on it. She couldn’t tell us when she wanted to watch YouTube videos or what she wanted for lunch. She couldn’t express herself in a way that we could reliably understand.

And you know what she did? She lashed out! And rightfully so! Because she had absolutely no way to communicate what she wanted.

And that is what happens when you do not give disabled people a voice, ESPECIALLY disabled kids. When kids have no other way to express their needs, they WILL lash out. They WILL get angry. They WILL yell and scream and have meltdowns.

The fact that parents don’t see that is baffling. So many self-proclaimed “special needs parents” or “autism mommies” wax poetic about how their lives are so difficult because of their kids, not even considering for a SECOND that maybe some of that would go away if they just understood that their kids are their own people with their own needs and wants and preferences, who NEED a way to be able to communicate that. No shit autistic kids lash out when they’re not given any way to communicate. The fact that so many parents can’t see that is absolutely baffling to me.

[this-is-ableism]

solidarity:

i have dyspraxia and hypotonia so i was never very good at the playground games that required athleticism (like tag). i was easy to tag and avoid being tagged by.

one day i was playing tag and one of my classmates—not even one i was close with—decided to make the rule that if i was it everyone except me had to run backwards. this gave me enough of an advantage that it was like my abled counterpart was it. didn't realize until now that that probably counts as an accommodation 💜💜💜

this is solidarity.

[d1g1t4l-cr1ppl3]

The whole "disability isn't a barrier, ableism is" always pisses me off because obviously ableism is a barrier and eradicating it would significantly improve the lives of disabled folk, disability does impact peoples lives and prevents them from doing things with or without ableism

[disabled-dippy]

I think that line of thinking is a fundamental misunderstanding of the social model of disability, which actually says that disability is an interaction between the individual and their environment, not just that accommodations (the lack of which are the result of ableism) will fix everything. I think the part that a lot of people miss is that the impairment still exists without or without accommodations.

While it is often true for a lot of people that they are primarily disabled by their environment, the truth is that many disabled people will continue to have impairments regardless of how much they are accommodated.

I also don’t think it’s useful to have that line of thinking, because the truth is that society will never be fully accommodating of disabilities. We can sit around and talk about how people would not be disabled if their environments were completely accommodating, but what does complete accommodation look like?

Not even mentioning that a lot of access barriers are completely accidental things that happen in the moment— someone leaving a cart in front of a ramp, an object blocking the sidewalk, a broken elevator. These are not things that can be fixed. They will inevitably happen and create barriers to access. And a lot of ableism is also completely accidental. Our implicit associations run extremely deep, and it’s very difficult to change them once you have them.

It’s nice to think about how access would be so much easier if it weren’t for ableism access barriers, bur it’s important to not get lost in that, and it’s even more important to not use it to minimize the experiences of people who ARE disabled by their condition, even in environments that are fully accommodating.

There are always going to be barriers to access, and there is always going to be ableism. We can’t change that past a certain point. Pointing out that ableism is an issue is fine, but trying to say that ableism is always what disables us and that we wouldn’t be disabled if society was accommodating is not true for so many people, and can really serve to minimize the experiences of these people.

[disabled-dippy]

I’m reading a study about how dysautonomia mimics raynaud’s syndrome, and the FIRST thing the study says is: “Patients with Ehlers-Danlos syndrome often present with discoloration of distal extremities, suggesting Raynaud disease.”

They follow it up by saying people with EDS have an “increased incidence of dysautonomia.”

Oh, okay. So what they mean is that EDS (or specifically, EDS with secondary dysautonomia) mimics Raynaud’s syndrome, not dysautonomia. The entire subject pool has EDS and happens to have secondary dysautonomia. This is supposed to be a study about dysautonomia, not EDS. They should not be generalizing these results about people with EDS to all people with dysautonomia.

This is what I mean when I say EDS is becoming the dominant topic of conversation in dysautonomia circles. Just because a lot of people with EDS have dysautonomia does not mean everyone with dysautonomia has EDS, and in fact the vast majority do not.

This overgeneralizing of EDS experiences to everyone with dysautonomia and the attribution of dysautonomia traits solely to EDS is a serious issue that I think we as a community aren’t addressing enough.

[this-is-audism]

a Deafie on Instagram made a post talking about how a lot of CODAs overstep when it comes to the Deaf community. a lot of CODAs take positions teaching ASL, etc. and generally act as authority on the Deaf community despite being hearing.

she called CODAs guests in the community who are welcome but perhaps they shouldn't start rearranging the furniture. this pissed off a lot of CODAs who were crying in the comments about how it's so unfair to them because they "didn't choose to be CODAs." no one said you weren't part of the community, just that you're not the authority on it. you are literally proving OP's point about CODAs overstepping.

anyways, this is audism

[this-is-ableism]

Once upon a time I was telling one of my aqcatinces (whod only ever seen me in my wheelchair) abt my able bodied best friend for the first time and they asked oh so very confidently, “so. Like why does he hang out with you? Is there something wrong with him too or is it just chairty?” There is shit wrong with someone people, an abled person being my a phically disabled person isn’t inspiring or charity ITS BASIC FUCKING FRIENDSHIP.

this is ableism.

[visorforavisor]

I think disability justice would be easier if abled people understood that being disabled is a mixture of all three of

I can’t do that without negative consequences

I can’t do that unless I have support for it

I can’t do that

and that trying to treat one of these as if it’s another one will get you nowhere.

[disabled-dippy]

Long ass rant incoming:

I recently started my clinical working with very high support needs autistic kids. This is not the first time I’ve worked with disabled students, but this is the first time I’ve worked so in-depth with them. I’m interacting with them for 7+ hours a day, constantly talking to them, helping them learn and develop new skills, taking them to gym and art and all sorts of other things. And this has really solidified the belief I have that 99% of neurotypical who think they know the first thing about autism do not know a damn thing about it.

There are so many people who are literally raging hate campaigns against literal children just because they’re autistic. “You just don’t get what it’s like having to parent them,” “they’re so difficult,” “they can never learn,” “they can’t contribute anything to society,” “they’re missing something inside.”

None of that is true in the fucking slightest. I knew this before, but it has become INFINITELY more apparent. My heart hurts for these kids because it’s so obvious sometimes that people have never even tried to get to know or understand them. They think there’s nothing going on in their heads, that they’re incapable of love, that they can’t learn, meanwhile these are some of the smartest, kindest, and most caring kids I’ve ever been around.

Yes, HSN autism has its challenges. Yes, it can be hard to parent or teach a child with profound needs. Yes, they often need much more attention and care and need help with things their allistic peers do not need help with. But to say that they are incapable of love or learning or that they are “missing something” is completely fucking untrue.

If they are incapable of showing love, then why do they notice when the teachers are upset? Why do they hug us? Why do they offer us their snacks or their treasured toys or stuffed animals? Why do they become distressed when other students are crying and try to help them? Why do they run to us in the mornings and cry at dismissal?

If they are incapable of learning, then how did they learn to use felt boards and AAC devices and sign language? Why are we constantly updating their learning goals because they keep hitting them? Why are they able to learn all the routines we have in the classroom?

I feel so much empathy for these kids because I know life’s been hard to them. I can see it on their faces, in their body language. I can tell that their boundaries have been repeatedly violated, because they are shocked when we listen to their discomforts and their fears. They expect us to keep pushing on with their lessons even when they are upsetting or cause them pain.

We regularly pause when we notice they’re distressed or distracted and it’s clear that they don’t expect us to. If I could describe to you the shock that one student experienced when they said they wanted to play during a lesson, and we found the time to let them play instead of pushing on and insisting it was learning time. Another student cried while we were brushing their hair and was shocked that we took that as a cue to stop and give them a break and let them play with their comfort toy.

We’ve stopped so many meltdowns just by giving students the chance to communicate what is bothering them. People complain that meltdowns are unavoidable, but then they don’t take the time to give the person the opportunity to communicate or try to figure out what’s bothering them. I’d say we avoid a good 80% of the potential meltdowns in our classroom literally just by understanding that these are kids with complex needs who just want a way to communicate what’s wrong.

It just makes me so mad that people cannot see this and think the autistic label means kids are irreparably damaged or some stupid shit like that. Treating these kids like actual human beings is an alien concept to most people. We’re not “miracle workers” or “breaking through the autism” or whatever other ableist bullshit people try to claim. We’re just treating these kids like normal fucking people.

This shit pisses me off so bad. Protect autistic kids (AND autistic adults), especially HSN autistics, because they are so so vulnerable and the world hates them for existing.

[disabled-dippy]

The people in my life when my disability that I’ve described to them in great detail actually disables me: 🤯

[sockatoothewafflebird]

random thought. we need more fanfics where our favorite characters are disabled in some way shape or form. literally even just something as mundane as chronic migraines or joint pain. and yes i DO want to write this and yes i WILL write my blorbos like this myself... the next time i'm hyperfixated enough to write and post fics about something.... Ahem.... but WE NEED MORE DISABILITY REP IN FICS AND IN FANDOM!!!!!

[disabled-dyke]

its so fucked that no car company makes a wheelchair accessible vehicle themselves. it’s all third-party companies that convert them. and its not cheap, it can cost between $20,000 to nearly $50,000. so you might spend *more on the conversion* than on the car itself. it makes me sick.

[this-is-ableism]

Sometimes having one visible disability and one hidden disability feels like living in two realities at once. People see what’s on the outside and think that’s the whole story. They comment, they assume, they “get it.” But they don’t see the part of me that’s quiet, invisible, and exhausting in ways I don’t always have words for.

They forget there are other things I’m struggling with—things that don’t show up in photos or casual conversations. I wish people would remember, visibility doesn’t equal severity, and what you see is never the full picture. Be gentle with people. We carry more than you know.

this is ableism.

[disabled-dippy]

disability microaggressions

I'm bored, so here's a list of all the disability microaggressions I could think of. yes, even disabled people can do these.

(1) using slurs you can't reclaim (ex: able-bodied people using the c-slur)

(2) toxic positivity/expecting a disabled person to get better just by "thinking positive"

(3) inter-condition ableism (aka aspie supremacy aka LSN people acting superior to HSN people; not limited to autism, but it’s most often pointed out in the autism community)

(4) the sick olympics/always having to one-up people's suffering

(5) assuming all disabled people/all people with a condition are the same (ex: "my friend has this condition and can do this, why can't you?")

(6) having a savior complex/acting like you're worthy of praise and admiration just because you hold the door open or don't abuse your disabled kid

(7) thinking disabled lives are entirely miserable and not worth living/saying you'd rather die than be disabled

(8) thinking disabled people should never have kids

(9) thinking disabled people don't deserve nice things/more than the bare minimum to survive

(10) giving unsolicited advice, especially if it's basic asf

(11) using limited resources designed for disabled people for the sake of convenience (ex: using a handicapped parking spot when you don't need it)

(12) treating disability like a moral failure (ex: "if you just prayed more, God would cure you" or "you must have done something to deserve this")

(13) thinking disabled people are lazy and leeching off benefits/social security

(14) lying about accessibility/making disabled people expend extra effort to access something (ex: "we're accessible, you just have to go up a ramp in the back and have someone carry you up the stairs")

(15) claiming you "don't see disability"

(16) skirting around the term "disabled" (ex: "special needs," "differently-abled," "handicapped")

(17) forgetting disabled people exist and not including them when attempting to make spaces more diverse

(18) expecting disability to have a "look" (ex: "you don't look disabled!" or "my cousin's got your condition and you look nothing like him")

(19) making the same unfunny, repetitive jokes, then acting like you've said something completely off-the-walls (ex: "you got a license for your wheelchair?" "you should really learn to stand up for yourself [to a person in a wheelchair]," and so on)

(20) using disabled people as inspiration porn

(21) treating people who have visible differences as sideshow acts

(22) making false equivalences/empathizing when you really don't understand (ex: "I understand your ME/CFS, I'm also tired a lot")

(23) diluting the meanings of different conditions/misusing terms (ex: "I'm so OCD")

(24) thinking disabled people are just not trying hard enough

(25) expecting chronic illness to just "get better"

(26) "can I pray for you?"

(27) assuming people with disabilities are faking with no evidence other than conjecture/your false understanding of how a disorder works

(28) speaking over disabled people/speaking to caregivers and not directly to the person with the disability

(29) "everyone's a little [insert condition here]"

(30) pushing someone's wheelchair or moving their mobility aids without their express consent

(31) asking "what's wrong with you?" or expecting disabled people to give you their entire medical histories and life stories on a whim