I’m not sure how to phrase or talk about our feelings on this issue, but if Tr!sha’s video “woke you up to how bad stigma is” for people with #dissociativeidentitydisorder then hoooooly shit you have a lot more waking up to do.

Take a deep breath before reading this thread.

This isn’t to diminish the pain or fear she has caused - yes, she has a large platform with many followers and spread misinformation. It can feel like “undoing” work youtubers have put in to de-stigmatize #didosdd. It’s a huge reminder of stigma & ableism, and that MAJORLY sucks.

But at the end of the day, the hate that she has spurred has always been there, and is only a symptom of much larger societal problems.

Let’s repeat: this is a publicized reminder of the ableism systems face on a daily basis, and only a tiny, tiny slice of it.

Recently, we wrote and gave a presentation on the violence faced by people with highly stigmatized disorders, and it took 4-5 whole slides to SKIM what we face in larger society. So to bring light to what we’re fighting against, I’m going to walk you through that presentation.

So let’s start there: with violence.
We’ve been... disillusioned with the word ‘stigma’ recently because we feel it doesn’t adequately capture what highly stigmatized disorders face.

Ableism isn’t just interpersonal issues, but it’s deep in our societal structures.

And this violence disproportionately affects black, Brown, and low income communities.

And yes, this is violence. Institutional violence. Societal violence. That’s the word we use because there’s no other way to capture what this community goes through.

So what is this violence?

My favorite story starts with that of famous patient HM. He was diagnosed with severe epilepsy, to the point where no treatments would help him and he was running out of options.

(Tw: lobotomies)

In 1953, doctors cut off sections of his temporal lobe (hippocampus) to stop seizures. This worked! However, HM’s memory was destroyed - he was unable to form new memories, and had permanent retrograde amnesia. This is how we realized that the hippocampus creates new memories.

However, 8 surgeries of the EXACT same type were performed on schizophrenic patients before HM. 8 surgeries. And no one noticed or cared that their memory was impaired.

8 surgeries where “no results were recorded” and they KEPT doing them for science until an abled man had one.

Yes, this is historical, but it sets the stage for how society views us and interacts with our lives.

Simply: that they are not valued in our societal structures.

To this day, people with BPD or DID are taken off the waitlist to receive organ donations (hint: because our lives are not valued). But! If you integrate and become “normal”, you can be put back on!

(2/3rds of those w DID choose to not integrate and live healthily as systems)

This devaluation impacts societal structures and how we are treated.

To keep us out of greater society, we are actively defined as abnormal, dangerous, and a threat. We are forcibly institutionalized and incarcerated to keep us away from the public.

For those who aren’t familiar with what being forcibly institutionalized is, this is when a neighbor or a friend calls 911 on someone in crisis, and against their will they are strapped to a gurney, transported to a hospital, and are forced to stay there for 3-9 days.

I had a friend call her uni medical services after a family member passed, not in crisis, simply asking for advice on where to seek help in the morning. Medical officials showed up, strapped her down, and took her away for a week bc she had a history of depression.

Outside of university (where they know your medical history) this can look like incarceration. Psychosis, trauma, autism, and DID can all lead to combative behaviors when in crisis, confronted by the police, and forcibly touched without consent.

(Tw: police brutality)

And for people of color, being confronted by the police in mental health crisis can be downright dangerous. Statistics show that half of the victims of police brutality are neurodivergent people of color. https://www.google.com/amp/s/www.nbcnews.com/news/amp/ncna538371

IF you manage to keep yourself out of hospitals and prisons with your diagnosis, having a diagnosis of a highly stigmatized disorder impacts you financially.

85% of schizophrenic people are unemployed, even though 70% want to work.

Being unemployed at such high rates means you’ll end up homeless, which worsens mental illness, which means it’s even harder to get a job, which means you’re likely to stay homeless... it’s a spiral that’s hard to break in a society that won’t offer you a job.

SSI (if you can’t work) pays you below minimum wage - not enough to support housing, let alone therapy (up to 70-100$ a session without insurance). Furthermore, you can’t save more than 2,000$ without having SSI revokes.

This can lead to financial dependence on family, friends, or partners - but if you get married you’ll lose your SSI too. This financial dependence only leads to much higher rates of abuse and partner violence for our community :(

And if you manage to survive all that, you’re probably going to emotionally be in shambles.

We’re constantly treated as objects of fascination or dangerous villains. We’re cut off from family and friends.

To avoid that, people w highly stigmatized disorders can end up leading lives of secrecy, hiding from those we trust the most to protect ourselves. We can be overly dependent on relationships that do support us, again, leaving us vulnerable to more relationship abuse.

All this ultimately leads to a loss of self worth.

AND a lack of community. If we lead secret lives, we can’t band together to support each other and face down the systems that make our lives so horrible.

So stuff is bad, REALLY bad, and not just when it comes to internet trolls spreading misinfo. This is why we desperately need activists and advocates, and why we need our voices heard in the fight for our lives within a society that throws them away.

Within all the drama and bullshit remember that this is a product of larger ableist and violent societal frameworks. This is one incident among many. Stay strong & keep fighting. We need you.