dippy's disability blog

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

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.

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.

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?

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.

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 💜💜💜

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.

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.

I can’t do that without negative consequences

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

I can’t do that

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.