disability wrath month

no one fucking tells you this so here it is:

when signing out forms to apply for disability / filling out a form for diagnosis

you’re supposed to fill it out as you on your worst days

like, I filled out forms that said I could do most things usually

like, my doctor added in the conditions like “yeah, they can feed themselves when not stressed” “they can do this when not stressed”

but how I should have filled it out was more like

“some days I can’t feed myself” “some days I can’t leave the house”

My doctor didn’t even know this, but I talked to someone who had worked with people with both developmental and intellectual disabilities for a number of years, and she told me to write down how it is for your bad days

this should be a thing they tell you, but it isn’t

It started out with filming more visibly disabled people, like high support needs autistic people having meltdowns in public and (especially fat) disabled people literally just using mobility aids, but once that was deemed less acceptable it moved to other things. Filming people acting "weird" in public. Eating weird foods. Falling asleep in weird places. Wearing weird things. Stimming. You get the idea. It's no longer safe to be visibly weird in public and that's an issue for a lot of disabled people. I recently had to lay down on the floor of a department store because I had an ME crash while out shopping. Not only did I have to worry about the normal things like people coming up to ask me if I'm ok, I also had to worry about some video of me at my lowest point, when I'm suffering immensely, being shared around as "haha look at this weird bitch on the floor". It's upsetting. It's scary.

And then there's fakeclaiming. A fun trend where people will film us in public to "prove" there's some kind of huge epidemic of people faking disability. Spoiler alert: there is not. Most of the time the people they film are real disabled people who don't fit into the expected mold for disability, usually service dog teams or people who use mobility aids who don't "look sick". And you would think this trend would be some kind of abled nonsense, but it's not. It's often other disabled people doing the fakeclaiming. Yes, there are some times when it's obvious a service dog isn't trained properly, but other than that, it's damn near impossible to tell if someone is faking a disability, and you're much more likely to target a disabled person than a faker. I'd love to say this trend was new, but it's been going on since the days of "the people of walmart" where many of the people posted were fat mobility aid users, always with the assumption that they used it because they were too fat or lazy to move on their own. In fact, the image of a fat person in a mobility cart has become almost synonymous with "lazy". It's one of the things that drove me to get my own expensive power wheelchair, to avoid the judgmental stares in the grocery store when I was just trying to exist, to avoid the fear of public shame. Even now when I stand up from my chair to walk to the bathroom stall or reach something on a high shelf, I watch the corners of my vision for that telltale phone in the air. I feel like I'm never safe from the judgemental eye of the internet, even when I'm logged off, and I'm sure I'm not the only person who feels that way.

Tik Tok, YouTube, Instagram, these places are all great for disabled people, especially those of us without access to the outside world. But it's also become a source of great anxiety for anyone who's uncontrollably "weird", mostly disabled people. Leave us alone, I'm begging you, we just want to go to the fucking grocery store in peace and safety.

Tl;dr

Rumination is probably the most common type of OCD compulsion, but I rarely see anyone talking about it. I've talked to multiple people diagnosed with OCD who didn't even recognize it as a compulsion.

Basically, if you have OCD you have terrible intrusive thoughts. They can be about anything, but common themes are fear of being a bad person, fear of hurting someone, fear of contamination. etc.

Rumination is when you get stuck in a spiral. Rumination is when you spend hours catastrophizing, overthinking, analyzing, telling yourself it's going to be okay.

I'll say it again:

Rumination is a compulsion.

Rumination is a compulsion, and that means you have to stop doing it.

I did ERP (exposure response prevention) for my OCD with a therapist! For 9 months! And it did help, but the idea didn't really click until I found this website a couple years later.

And Oh My God. It made things make so much more sense, and I was able to pull myself out of an episode even though I wasn't in therapy or on meds at the time.

Genuinely if you have OCD, or even if you suspect you have OCD, I'm begging you to read some of these articles.

Like this was genuinely life changing for me.

Here are some of the ones that were most helpful to me:

Defining Rumination

How to Stop Ruminating

ERP Exercises for Compulsive Rumination

If you need help with eating, it's okay.

If you need help with going to the bathroom, it's okay.

If you cannot get out of bed at all or do any of the regular tasks of daily living yourself, it's okay.

You can mourn the losses and the difficulties. You can mourn and rage against the systems and people that often prevent people from getting their care needs met safely, kindly, and with dignity.

Just please try to remember: you are not the problem. Your care needs are not the problem. They simply are what they are.

Like, if you go on meds and that happens, it's not because whatever's going on with you is jut Too Severe or that you're doomed or only people with Other Illnesses get to have meds that make them feel actually good and you have to settle for "miserable but somehow so hollow I no longer care about the misery" and be grateful you're no longer actively suicidal or whatever.

if i don't take this pill i spend the day as a dirty, inept husk, a sad sack of well-meaning but futile intentions just sapient enough to be dimly aware of everything im unable to be.

The person I was when I was very depressed did not feel like the real me. That was a version of me that was very ill. The "real me" is the me that is able to dance at stoplights and make art and enjoy food and laugh at jokes. And for now, I need pharmaceutical help to get back there.

The seventies had a much more limited menu of psychiatric drugs, many of which were harsh as hell. The antipsychotics were notorious for causing tardive dyskinesia, to the point where "weird twitchy body language," became an indicator of "crazy" in our movies—that's not because they were confusing schizophrenia with something like Tourette's (although precious few writers bother to find out much about Tourette's), it's because for a bunch of people, their ability to manage psychotic episodes was dependent on drugs that would give them lifelong tics if the dosage was the slightest bit too high, or sometimes if it wasn't.

What it also had—what I saw slowly changing during my lifetime—is the idea of a doctor as an authority figure rather than the doctor as an expert whom you consult for their specialized knowledge.

Listen, though. Listen, I was a kid in the eighties, and I had multiple health problems even before third grade, starting with multi-strep-infection festivals of pain every winter (this was eventually traced to a large sinus cyst, but not actually fixed until my twenties). You have that many strep infections, they give you antibiotics, that's just the way of things.

When I take antibiotics, often enough, all it does for me is give me a rash. I remember my mother taking me off the Pink Goop Of Yecchhh (this was when I was too young for pills) and bringing me back in to the doctor to inform them that I was reacting to penicillin. And I remember the doctor absolutely browbeating her about trying to diagnose me with something without medical backup, about taking me off the medication before I'd gotten an appointment, and finally grudgingly offering to try another antibiotic instead.

(As it happens, I also react to all penicillin drugs, even the ones they thought I wouldn't, and all sulfa drugs, even the ones they thought I wouldn't, and the only safe one that they commonly prescribed was erythromycin, which I despised, as the stomach friendly versions were not there yet. But. That's not the point, or not the point exactly.)

When I had my kids, one of 'em ended up with a very familiar little bumpy rash while being treated for an infection, and I went in to the pediatrician prepared to fight for my life, because I remembered how hard this was. And the pediatrician nodded, and said, "Your instincts are good, this looks like penicillin reaction to me. We've got some alternatives…"

Because doctors, although they can still be overbearing and arrogant, cannot take completely for granted that they are the ones in charge.

Which makes an enormous different in psychiatric treatment especially. Because there's a ton of nuance. You can go in and say, "Look, I can tell this is working at raising my mood but I'm also jittering out of my skin, can we find a relative drug or just chop the pills in half?" Or you can say, "I mean it's fine on one level but I don't feel like myself, can we try a different thing?"

When a doctor is an authority figure who tells you what to do, who decides when you are sufficiently fixed and what you look like (and feel like) when you are yourself, you cannot trust psychiatric medication.

And it didn't feel like being forced into an unfamiliar mold, turned into someone I was never meant to be. It felt like having layers of weights and shackles and masks stripped off so I could finally see and feel the person I was supposed to be the entire time. Discovering that medicated for anxiety I'm an extrovert, not an introvert, didn't feel like medication had forcibly turned me into another person. It felt like a revelation. Suddenly I understood why my mother talks to strangers at the grocery store. I'm more like her than I was. I'm more like me than I was.

Maybe your problems are less severe. Maybe you aren't nearly housebound with physical and mental health problems, with anxiety so bad you've developed agoraphobia and are starving because you can barely force yourself to leave your room once a day to eat and go to the bathroom. Maybe medication doesn't turn you from a miserable lump that lies in bed and has mental breakdowns and feels guilty for imposing on their friends and basically nothing else, into a person who can hold down a job and feed themself and live on their own and make art and laugh and take the bus without spending the entire time petrified with terror of the other passengers.

But medication is fucking important. Having the option is important. Not being talked out of it is important. My dad tried to tell me he'd read online that people went off antidepressants after six months, and I told him maybe people with temporary situational depression, but not me with lifelong intractable depression.

If I wasn't on medication I'd be dead.

Already-inadequate social safety nets are already being dismantled and I think the cultural environment is going to become more and more brutal to disabled people.

We've seen some of this already obviously. The socially-acceptable, earnest explanations that the r slur is okay now because everyone's saying it, the refusal to do literally anything to protect disabled people from covid, the austerity so many governments are enforcing on the most vulnerable members of their populations.

Politics and culture are in lockstep on the insistence that disabled people are expendable. I think this has already changed the social landscape dramatically and it's only accelerating.

As the number of people too disabled to work surges from the longer-term effects of an unusually disabling virus, as work becomes increasingly brutal and underpaid (your actual income number MAY be the same, but you can't buy as much food or housing with it, and new hires are being paid even less), as social services continue to be gutted, people who care for disabled people are going to increasingly see us as burdens and see our survival as incompatible with their own.

If you aren't yet disabled, PLEASE stand up for us and find ways to organize additional support instead of just dumping your disabled loved ones on the street to die.

"I'd never do that!" Good!! Hold on to that!!Bc the Overton window will shift your opinions and politics if you let it.

So many people who were righteously angry five years ago about governments suggesting killing disabled people was an acceptable price to keep the economy running, are now repeating those same conservative party lines almost word for word and thinking it's different because they're used to it now.

It's going to become increasingly common to abandon disabled people. It's going to be described as setting boundaries and protecting your peace and prioritizing reciprocity.

Exactly what is already happening to me, in leftist spaces too.