Lost in my Mind TARDIS

When I have a story that supports them, and the funds/mutual service built up for a sensitivity reader.  I don’t have epilepsy, or a current personal relationship with anyone who does.  Which doesn’t mean “so they can never exist”; it means “I am comfortable in my ability to do the research for a secondary character with epilepsy, but a protagonist has so much screen time, I would require at least one close beta who understood epilepsy as a personal thing, and could steer me accordingly.”  But sensitivity readers cost money–and when they don’t, they cost time, as sometimes exchange of services can cover the bill–so until I have a story that fits the character, I can’t afford to make the investment.

I have difficult to control partial complex seizures (I’m currently on 3 antiepileptic medications, have been on up to 5 at once, and my current seizure free record is 255 days). I’m photosensitive. I have had tonic clonic (aka grand mal) and atypical absence seizures, clusters of seizures, and status epilepticus. I’ve also experienced 3 drop seizures, which was exciting LET ME TELL YOU.

And I’m a jock in the vaguely Antimony Price skillset (former gymnast & tumbler/trampolinist, current aikidoka, I went through a period of time where being up high wasn’t allowed so no circus for me) so I have A Lot of Words about how seizures and postictal states effect that whole range of movement things.

OK. Some people want to make the boycott larger. That’s not going to work. Here is why.

When a large company like Marvel or Disney sees a drop in revenue they’re going to want to know where and why. If you are indiscriminate in where you boycott they’ll see a drop of revenue across the board and not know what it is you are boycotting or why. If they specifically see a drop in revenue based on something very specific they’ll get the message. 

My opinion here is to just boycott the Captain America book or anything Nick Spencer writes. Make the missing revenue obvious. If you subscribe to a digital service that sends you the comic cancel that service. They’ll ask you why you are cancelling. Tell them that you are cancelling because of what Nick Spencer and Tom Brevoort did to Captain America and his legacy. 

[image of a message that reads: Hi, I’m [name omitted], an English professor and medievalist. I’m proposing a special session for the International Congress on Medieval Studies (Kalamazoo) on developing inclusive courses in medieval studies. I’m sort of assuming that you (or y'all) behind this awesome Tumblr are academic-y types and I’m wondering if you ever attend Kalamazoo and if so, if you’d be interested in being part of a session. If you’re interested, could you possibly email me? Thanks!]

Well, hi, it’s just me here running MPoC. I’ll level with you. The last time I was invited to an academic conference, I was faced with the only accessible entrance of the building I was supposed to give my plenary presentation in being locked, when I arrived at the time it was listed for the speakers to set up. I was faced with either leaving, or basically reenacting the Capitol Crawl on the front steps of a lecture hall where I had been asked to speak on accessible academia/para-academic work via social media.*

This resulted in me attempting to return, in great pain, to my hotel room, but I was accosted by the event organizers on the sidewalk near the venue to be lectured on how much they REALLY cared about accessibility and how dare I, how the weekend had been nothing but problems, and how this was just the icing on the cake…for them. I ended up having to set down my belongings and setup equipment on the ground in front of me in order to stay standing long enough to receive my scolding for being inconveniently disabled, but I eventually just asked my companion to help if possible and went on my way, slowly shuffling out of scolding range until I got back to my hotel room.

After tearfully resting for 2 hours or so and girding my proverbial loins, I packed my things, skipped out on an already-paid-for-by-the-organizers 500 bucks a night hotel, and instead spent the rest of that day and night traveling for many, many hours across an international border and back to my home after not even giving the speech I had come so far to make. I was silent, because I had been silenced. I have been silent until now.

This might seem like an overreaction, but the locked accessible entrance came after questions I’d asked weeks before the conference about accessibility, locations, and relative distances (”within walking distance” makes the assumption I CAN walk) between locations were treated as bizarre accusations;

after I’d spent my initial morning there wandering for literally hours (which is what put me in such bad shape by the next day) trying to find where I was supposed to register since I had neither been told nor did I have anyone to contact for information, directions, or questions;

after the only way I could get my schedule was by looking through a ridiculous program book with no “by speaker” index (just read it through and see if your name shows up!), and finding out I had been signed up to appear on several panels and Q&A session without even being consulted;

after  having to be taught what my roles were at events literally moments before performing them (and a great deal of misinformation being given me);

and after a day and a half of feeling lost, confused, terrified, and out of place in another country where I knew no one, feeling less sure of myself and increasingly wondering why the hell I had been invited there at all with every passing moment.

The icing on the cake for me was getting an email a week or so after the conference from the main organizer blaming me for the locked door because I had showed up “too early”, when I had definitely showed up exactly 30 minutes before my presentation as presenters had been requested by the program book to do. Apparently disabled presenters are only supposed to receive 15 minutes for setup because that’s equal access? Something something the venues fault; something something you’d better not trash us on social media for this.

So, why am I telling you this, O well-meaning and benign requester of my presence?

Because this isn’t the first time this has happened, it’s just the most recent, and my recent I mean this literally happened less than six months ago.

Because it seems like everyone wants my expertise, my words, my research, and my oh-so-precious marginalized perspective but they most certainly do NOT want to have my messy, inconvenient, chronically ill, DISABLED BODY at their academic events. This is exactly why I decided to stop becoming faculty in its tracks and went into Disability Services instead. I’d rather spend my time and energy helping student of the sort that I was navigate an incredibly hostile environment, which is what I did for years before they cut the funding for my entire sub-department and I was laid off.

Because I’d like it if people stopped casually soliciting my appearances when they have seemingly no desire for my problematic, inconveniently actual, physical presence in their precious academic spaces. I do in fact make appearances, but I’m really limiting my participation at this point to venues and events where I have been assured that my being able to actually participate isn’t some kind of unforeseeable burden and punishment to those who have to figure out what To Do About me.

And yes, this is on top of having to deal with the fact that people have sent threats and other Unpleasantness to events I’ve appeared at before, because apparently posting works of art online that feature and center people of color in European art history isn’t particularly popular with white supremacists, especially when done by a person of color. And yeah, I’ve had to file police reports because stalkers and harassers have followed me around at events (or threatened to show up at my old job). That’s also in addition to having to deal with sexism, microaggressions, and people unprepared for the fact that I’m frigging POOR, and “what do you mean you can’t afford to come to the gastropub with us?”

So, I get that you want my expertise and what I have to say, or the products of my research et cet, but what I’m telling you is you’re already getting that in a rather convenient form, and it’s not even behind a paywall. Use it, take it, do what you want with it. It’s free, and you don’t have to offer a cent because all I ask is that those who can afford to do so might be interested in dropping a dollar in my tin cup so that those who can’t afford to do so can keep seeing new content and learning from discussions.

So yes, I am interested in attending conferences, but I’m not interested in having to launch a full scale multi-pronged team investigation into whether or not I can be expected to be treated like an actual human being while I’m there, or even be able to get to the damn pedestal you want to put me on. I can’t afford to be nice or polite about this anymore, I’m too tired, I’m too busy, and I’m too sincerely traumatized by it at this point. If you want me at Your Thing, do me a solid and just link to your accessibility and anti-harassment policies before even asking me to contact you about it, and if you don’t have them, don’t bother.

Okay it’s been a whole day and I’m still angry about that hobbit casting thing, so let’s lay down some Tolkien canon here.

Fact 1: Per Tolkien, there were originally three races of hobbit. The Stoors were a small group, they were broad and stocky, they grew facial hair, they liked rivers, and their skin color is not specified, so Tolkien probably meant them to be white (but there’s no reason they have to be, since again, not specified). The Fallohides were a tiny group, they were thin, pale and tall, they were bold and good with languages, and they like trees. The Harfoots were the distinct majority, they lived in holes, they had hairy feet, and they were brown. Tolkien is super clear on this. He explicitly calls out Harfoots as having browner skin than other hobbits when describing the races and he uses phrases like “nut-brown skin” and “long brown fingers” when describing specific hobbits to back it up.

Fact 2: Britain planted its ravenous imperial flag firmly in the soil of India three centuries before Tolkien wrote The Hobbit. He knew what a brown person looked like. He would know he was not evoking a slightly darker shade of Caucasian when he said a person had brown skin.

Fact 3: Bilbo, Frodo, and all of their friends are aristocracy. Sam is the only hobbit we ever meet who is an actual laborer. In Tolkien’s time, laborers worked in the sun and middle class and aristocracy stayed inside where there was something resembling temperature control. Apart from Sam and Aragorn, no one in the Fellowship (or Company) ever voluntarily got a sunburn. If Tolkien talks about brown skin he’s talking about brown skin, not a farmer’s tan.

Where does this leave us?

Well, Tolkien says that after colonizing the Shire, the three hobbit races mingled more closely and became one. This leaves us with two options.

Option A: He’s talking about that thing that sci-fi writers sometimes do where “everyone is mixed race.” So all three races would have smeared together into a single uniform color. What color? Mostly Harfoot, aka brown. The “strong strain of Fallohide” in the Tookish and Brandybuck lines means maybe they’re white-passing, but in this scenario all hobbits are brown.

Option B: He’s talking about a more melting-pot scenario where visual racial distinctions still exist but everyone lives side-by-side in a fairly uniform culure. The Tooks/Brandybucks having a “strong strain of Fallohide” means that they are themselves remaining strains of Fallohide, and are straight-up white. Merry, half Took and half Brandybuck, is thus white (possibly part Stoor, given Brandybuck comfort with water); Pippin, half Took and half Banks, is either white or biracial. The Baggins family, sensible owners of the oldest and most venerable hobbit-hole anyone knows of, are blatantly Harfoot, making Bilbo and Frodo (half Took and half Brandybuck respectively) also biracial. Fallohides being exclusively adventurous high-class types, and the Gamgees being staid low-class homebodies with a distrust of moving water, Sam is obviously Harfoot and thus completely brown. (Smeagol, a Stoor, is probably white, but as discussed above, doesn’t have to be.) In this scenario, a minimum of three of five heroic hobbits are various shades of brown, four out of five of them could be, and most background hobbits are brown.

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The prefix “neuro-” refers to the structure of the nervous system. Someone who is neurodiverse (or neuroatypical/neurodivergent, though I personally dislike those words because they imply “otherness”) has a developmental or otherwise structural difference in their brain. Someone who is neurotypical has a structurally typical brain.

Mental illness is psychological, not structural. You can be mentally ill and still neurotypical. Neurodiversity is something that you live with all your life, whereas mental illness isn’t.

Neurodivergence isn’t about gross anatomy of the brain. You can not see autism on an MRI. You cannot see most epilepsy on an MRI. Dyslexia? Nope. PSTD? nope (fMRI though yes!). It is about how the nervous system, mostly the brain, works.

Mental processes are…wait for it…neurological. The patterns of neuron firing causes all the oh so fun stuff that happens with mental illness (or lack thereof).

And no single individual CAN be anything-diverse. Diversity is a function of groups.

This reads a WHOLE LOT like some autistic people trying to do what early, physically disabled people did with “our minds are fine”, only it’s “we aren’t cr*zy”

sorry to tell you this but mental illness isn’t temporary either

never heard of anyone who just one day stopped having schizophrenia or bipolar disorder, no matter how much treatment or time they had

some illnesses are recurring – you can be asymptomatic for an extended period of time and then whoa hey here it is again (depression can be like this for some people). which isn’t the same as having a mental illness that’s always affecting you to some degree, but it also doesn’t qualify as temporary

and some people can pretty easily manage their illnesses with medication and therapy but that sure doesn’t mean they’ve stopped being ill, as many of us can tell you from past experience in discontinuing treatment

The person who coined neurodivergent, however? Hell yes. Doesn’t want to have to die on this hill bc it’s unnecessary & should be uncontroversial to be like “hey there’s a lot of ways brains could be divergent” but...well...apparently...

Griffinclaw definitely.

You really cannot do disability or autistic advocacy without mental health advocacy.