Oh, hi, I guess it's May now

 Montana's LEAD-K bill was signed into law on my birthday!

So that was a nice present for me, and for all the deaf babies in this state.

Meanwhile, one of the ASL-support projects I'm doing on is working on English literacy with a deaf 7-year-old. He's from a deaf/signing family and doesn't use any hearing devices, so he is learning English as a second language through reading and writing.

Right now we're developing a play based on the story "The Boy Who Cried Wolf" (and specifically, Motion Light Lab's storybook app of the same name) that we are going to make his family act out. There will probably be a public post of the video someday, so stay tuned for that!  His 4-year-old sister has been cast as The Wolf.

We've been learning about story structure, characters, settings, and theater terms. Today's task was making a list of the props that will be needed. In our version, they boy does not CRY "wolf" (this is an ASL story! Who would hear him?)- he texts it.  So we need to find 5 phones. Plus some other things.

 

 

Next we need to make a list of costumes, and figure out where to get 3 sheep.

Happy not-very-new-anymore year!

I am doing a TERRIBLE job of posting posts, here or Patreon or anywhere else, but it's because I have been doing a reasonably good job of juggling many other tasks and (so far) keeping all the balls in the air.

1. Montana Family ASL launched, albeit in a rough-and-ready, work-in-progress sort of way. The pilot session is going well! I expect an expanded, improved, polished-up version to open in April. (If you're in Montana and have a deaf/hh/nonverbal child, you can sign up now. I'll use your waitlist information for scheduling.)

2. The Montana Lead-K bill* is due for a first committee hearing next week. I think we have a strong roster of proponents ready to testify, with a deep bench and all of the relevant facts on our side. Fingers crossed!

*(It's not a really real, full, LEAD-K bill. It's a tiny incremental beginning, which is the only thing realistically feasible given the current state of Montana's legislature and early intervention setup. But it's a start!)

3. My ASL Kindergarten project-slash-curriculum is growing, and has been collecting an increasingly fancy & well-known set of admirers. Shout-out from Hands Land! Woo hoo!

4. Kids and families I am working with individually are making lots of progress and telling me lots of compliments. Including:

“My kids are thrilled to spend time with Cecily as she empowers them  with the building blocks of American Sign Language. I love to see them having so much fun playing with handshapes while they are developing a deeper grasp of their language”

“As a social entrepreneur, I am delighted by Cecily’s work to increase access and empowerment through American Sign Language. As a parent, I am over-joyed to have her knowledge imparted to my children. Our community is greatly enriched by her efforts!"

“What a fun and wonderful time of language learning for my deaf kids! We love our sessions with Cecily!”

"Ahoy, Captain Marvel! We are so grateful for the blessing of knowing you, the generosity of your heart as you share your passion with us, and the possibilities that are ahead of us."

"I talked to [other mom] yesterday and we don't know what we would do if you are not here for advice. Thank you!"

So that's very nice for me. (I fished very directly for these compliments by saying to people "hey, please compliment me", but I think they are still sincere.)

 

5. As a result of the Holiday Season, I am now in possession of an iPad, an Apple Pencil, and the Procreate app. I spend all of my spare time fiddling with brushes and learning how to export movies, instead of writing blog posts.

 

Some of us are very interested in knights and dragons, and specifically in Tomie dePaola's The Knight and the Dragon. I am also very interested in all of these things, particularly in the librarian princess who saves those other poor saps from lives of incompetent combat while providing delicious barbecue meals for the entire realm.

Some of us are very interested in ASL handshapes, and the ways they behave in signs.

(This one is the least complicated but by far the most actually useful thing I've made so far.)

Ta da!

Felt Creation Update

If you like sitting around in your pajamas stabbing things with needles, I highly recommend Felt as a medium of artistic expression. You may remember various needle-felting projects of yore*; more recently I have been doing embroidered felt, and specifically embroidered felt Christmas tree ornaments.

Here we have a Maid-a-Milking and a Drummer Drumming:

These delightful designs are from Larissa Holland, who has many other delighful designs as well, and very easy-to-follow tutorials. (Mine deviate from the patterns in a few ways, most notably using felt instead of wooden beads, and needle-felted faces instead of drawing.) I have also been making assorted birds and other freestyle shapes but have given them all away without taking pictures. 

Normally, I would close this post by saying "I have a huge bin of felt! Come sit in my living room and stab things with needles with me!" but in these pandemic-ridden times I feel guilty even issuing completely empty invitations to a nearly-nonexistant virtual audience. Stay out of my living room! Maybe next year.

 

 

*The best needle-felted thing I have made so far was this pangolin, in 2016, which I seem not to have boasted about on the internet:

 

It turned out very nicely but was a little bit too much effort to be worth repeating.

Stick it to The Man (but also ask The Man to help)

The world in general seems to be disintigrating in a number of upsetting ways, so I am concentrating all of my energy on getting better early intervention services for deaf children in Montana. And ignoring everything else (which is a VERY Montana thing to do, and is contributing on some level to the pre-apocalypse. But oh well).

One of my projects is Legislation! Which I knew very little about but have spent the last few years navigating. Montana's governmental structure is a chaotic mess! But eventually I deciphered it and made a bunch of helpful diagrams and figured out the process. 

 

I am the chair of Montana's Lead-K committee. (LEAD-K is a national group working to get bills passed in all 50 state legislatures; more information below!) The ACLU is also working with state offices to provide support for Lead-K bills headed for the floor in 2021. We have been working with Connie Keogh (Montana HD91), and she has sent in a bill draft to Legislative Services. (One of the processes Montana does is that you aren't allowed to write your own bill. You send in a request saying what you want to achieve, and then the people in Legislative Services figure out how to write a bill to do it.)

My schpiel about this project: Early childhood is a crucial time for language acquisition; unfortunately many deaf/hh children end up with language delays due to insufficient exposure to accessible language in their first few years. Often no one realizes that a child is experiencing language delay or deprivation until they arrive in kindergarten, when it is expected that the children have already acquired either English or ASL and are ready to begin learning academic content. The overall goal of the Lead-K bills is to increase language access and accountability for young deaf and hard-of-hearing children. Specifically, we are working to strengthen requirements for language assessments in early childhood intervention services, with an end goal of reducing (or eliminating!) language delays and deprivation.

The bill summary we are working with right now reads:

Create statutory guidelines requiring that early childhood services provided through the Montana Milestones program include specific assessments for deaf/hard of hearing children and that the program record the results. The intent of the legislation is to have written requirements for the use of language-specific (English and/or ASL) evaluation and assessment tools for language acquisition in deaf and hard of hearing children, in place of the current unspecified "communication" assessments, and for the collection of statewide data related to language acquisition outcomes in this population. 

 

That got sent to Legislative Services and now we're just waiting for them to tell us what we can accomplish. (We're also waiting to see what is going to happen with the Montana Legislature- it is supposed to be in January and we're in the middle of a pandemic and the state is overrun with delusional right-wingers who won't do any safety measures and don't want to do a virtual session and the non-right-wingers don't want to do a super-spreading event and they are arguing about what to do.)

And meanwhile, I am still chugging along developing ways to provide language support outside of the system. Fight the power! Make a bunch of worksheets!

Progress Report

 I have been doing many things besides posting on blogs over the last six months, the most prominent of which is a sort of massive and disorganized and multivalent project about deaf advocacy in Montana, educational materials for deaf kids, and some books. I keep thinking of one more thing to add and one more way to improve something else. Finally I decided to stop waiting until the whole thing is finished and just start sharing it (and soliciting support) now.

So I made a Patreon. I have barely figured out how to use it but I'm making progress. The overall goal is to support my efforts in deaf advocacy and language access, in Montana. Here's what I said in my description of the project over at the moneymaker:

Montana is high, wide,  handsome, but we have some deeply entrenched institutionalized problems going on behind the scenes. Language access for deaf children and communication access for deaf adults are limited in quality and quanity. There are not enough interpreters in the state, and many of them are dismally underqualified.  The problems are exacerbated by the size of the state and the distance between cities. I am working to slowly improve these things. It's a big job, and I would be very grateful for your support.

What I'm Currently Working On:

I have 3 main projects in various states of progress. 

Lead-K MT

This project is a committee trying to get a bill passed. The goals of the bill (one of many in a nationwide operation) will improve Early Intervention for deaf children in Montana.

ASL School

I'm working on activities and plans for families to use at home with young deaf children. I'm working on ages 3-5 currently, with robust testing on the children in my Covid bubble.

Book

I am making a picture book. It is Animalia but for ASL, with things on the page that have signs with a particular handshape. A related coloring page gives you the idea: the signs for gorilla, girl, turtle, game, crackers and more all involve one handshape: a closed fist with the thumb sticking out.

So that's what I'M up to these days (I am also working on a quilt for someone who should not worry; I promise progress is being made). I'm doing language assessments and providing IEP support and running (in-bubble) classes and making up worksheets and activities and materials to help people learn ASL. It is fun and interesting. The patreon support goes to more better products, more (free-at-point-of-service) advocacy, instruction, early intervention, remediation, explanation, advice, testimony, and assorted other types of help. Hopefully someday in the future, it will be able to support more classes and more traveling to other parts of Montana and more training and facilitating other deaf people to become teachers. 

The lack of available services in Montana is a little overwhelming. It's partly due to funding issues, but even if the funding issues were resolved, the resources just don't exist. There aren't enough interpreters, and there isn't an interpreting program in the state. There aren't enough (any) SLPs with LSL certification.  ASL classes are only available in a few towns, and they tend to be overbooked, and they don't go beyond ASL 2. There are almost no (I think 1?) deaf TODs and the hearing TODs are overworked and the programs they work in are understaffed and Total Communication. What a mess! Obviously I am not going to fix the whole thing by myself. But I can (and am) provide expertise and services that are desperately needed, in an overall system that does a really dismal job of educating deaf children and including deaf people in the community. Baby steps, butterfly effect, you have to crawl before you can walk, and so on.

***

All the advice and manuals about setting up Patreon talk a lot about how important self promotion and networking and social media are. I assume they are right, but I don't like being told what to do and I also don't want to bother people too much. I'm hoping that families with deaf kids, and teachers who teach in bilingual/bicultural programs*, will eventually find me and begin a happy relationship where they support my project and I send them materials and activities and ideas that they can use. I'm counting on the American deaf communities' interconnectedness and dedication to improving deaf ed, not on the general public. I'm not really offering anything that the general public would care bout. Do people actually want "early access" to things, or having me tweet "thank you!" or having posts that only patrons can read? None of those things has any appeal to me, but then I'm frequently an outlier in preferences (among other things). It would be lovely to be proved wrong, but I decline to make a concerted effort at self-promotion, at least for now. I put posts on Facebook and Twitter and now I'm working on other things for a while.

That being said, here's the link if you are curious:

 Become a Patron!

I am going to use this blog for some connected ideas/resources, which might end up seeming like a kind of promotion?  Explanations and instructions and images etc that don't fit neatly into Patreon's weirdo setup. I think at this point I have about 3 followers left**; if you are among them, get ready to be swamped by a lot of posts about ASL and deaf education. I will probably figure out how to put the Patreon button somewhere, too.

*meaning, programs for children who already know ASL, that teach other subjects (reading, writing, math, science, art) IN ASL. Hearing people generally don't understand the difference between this kind of program and one that "teaches deaf kids ASL". I'm sure I'll write a blog post about this at some point.

**I wonder why? I've been posting so regularly and fascinatingly and frequently recently.

Hello, World!

This blog is still alive! barely. We'll see what happens. I started it in the first place for my grandmother, because she was a little shaky with the email skills but wanted to hear about what I was doing and how everything was going, and also I was tired of repeating how I was six times a day when my family all asked how I was doing and how everything was going. (I copied & pasted replies numerous times.) But then it turned into a place to entertain myself and show off. I still like to entertain myself and show off, but I didn't have the energy for it during cancer treatment.

Cancer treatment is over! I am officially cancer-free.

Just in time to be stuck at home because of the Novel Corona Virus. The governor ordered restaurants and bars to close exactly as I was getting over the radiation burns. So nothing has really changed for me, because I was basically housebound for the last eight months.

Anyway I assume I will resume the entertaining myself and showing off via the blog now. I'm back!

Introduction to Deaf People*

Hello! Have you recently met your first Deaf Person, and are suddenly confronted by a number of unfamiliar thoughts, questions, and assumptions? Do you (admirably!) hesitate to bother your own specific Deaf Person with lots of demands for explanations and introductory materials? Never fear! I am here to tell you a bunch of facts to memorize, words to google, and links to other websites that explain various things in greater detail than I can be bothered with. NB it turns out I am too lazy to look for websites. You will have to use your powers of google after all.

*I know that non-signing, DeafBlind, and non-USian deaf people also exist. Those ideas are for the advanced level, though. Baby steps, here.

1. Deaf people exist. I mean, I know you sort of knew that, but you probably did not really think about it as far as, like, their actual existence in the world. But here we are, existing away! This means that, over the years, we have developed a number of ways of coping with the hearing world and with hearing people. Those ways almost never involve relying on a hearing person to "help". I know YOU use your sense of hearing to help you accomplish all sorts of things, but that does not mean that using hearing is 100% always required. Also, the fact that you are not aware of some accommodation does not mean it does not exist. Here's a list of things that all the deaf people know about, but that consistently amaze and astonish hearing people:

• video relay
• bedshakers
• hearing dogs
• sound sensors
• visual (light-based) notification systems
• bluetooth hearing aids/CIs
• etiquette/social norms rooted in the assumption that people can't hear
• interpreters
• live captioning

Relatedly, things that are entirely sound-based are not accessible to deaf people. For example, podcasts or radio shows. You should not suggest podcasts to your deaf friends, and you should check for captions before you send them that youtube video. No, I can't hear sirens when I drive; I can see lights, and see other people pulling over; it is just as safe for me to drive as it is for you to drive with your radio on. Sometimes people provide transcripts or captions for things and sometimes they don't. Hearing people run around assuming they'll have access to whatever information all the time, spoiled brats that they are. I run around assuming I won't have access to things and trying to decide when to ask for accommodations (conferences, doctors offices), when to figure out a workaround (videos on the internet, dudes with mustaches, buying something from a store) and when to give up/avoid the scenario (movies in the theater, big dinners full of hearing people and centerpieces).

The moral of #1 is that you should not assume things will be accessible and you should also not assume that there isn't a solution and you should assume that your deaf friend has spent way, way more time thinking about accessibility than you have.

2. Relatedly to THAT, many deaf people spend their free time socializing with other deaf people. For some reason hearing people are always especially surprised by this. Like, they imagine (to the extent that they think about it) that each deaf person just wanders around, lost and alone in a hearing world, hoping for help and patience and attention from some kind hearing people and being grateful for whatever little snippets of communication and information come their way. That sounds crappy; why would we do that? It is way easier and more fun to hang out with other people who know your language and have already internalized norms around accessibility, respect, etc. and already know all of the information in this blog post.

I have lots of opinions about the whole "Deaf Culture" thing, as well as the capitalization of Deaf, but those are beyond the scope of this blog post so you can just google them later. It is definitely true, though, that there are a whole host of minor etiquette things that are just slightly different from hearing norms, and also that it is harder than you think to unlearn your norms (or learn a new set, whatever) around things like getting people's attention and how much touching is okay and if it's more rude to ask for repetition or to pretend to have understood something you didn't. And, like, how to position yourself when sitting in a group (so that you aren't blocking anyone's view of anyone else) and whether or not you are backlit (don't be) and if you should put a bunch of stuff on the table that will impede sightlines or not (you shouldn't, and you should remove them immediately if I ask you to). When I'm in hearing spaces I constantly have to either put up with stuff that's hindering me or remind people to do things differently. In deaf spaces it's already set up the right way and people are already doing things accessibly. Of COURSE deaf people choose to hang out with other deaf people, you weirdos.

The moral of #2 is that if you would also like to hang out with deaf people, you should pay attention to the fact that some norms are different and be sensitive to behaviors that you might need to change.

3. There are lots of sign languages/ASL is not related to English. I am so bored of this conversation and it happens with so many otherwise well-informed people. By far the most common response to the first part is "That's inconvenient. Why don't they all use the same language? That would be much better!" My general answer is "why don't hearing people all use the same language" and then that usually gets us to the underlying assumption(s) that somebody, relatively recently, sat down and invented Sign Language and/or that ASL is based on or otherwise related to English in some intrinsic way- in either case, not being an actual language of its own. (People often seem to believe both of these things: they think that "sign language" refers to an invented manual code for English. In which case it is very confusing that they would also think that all the deaf people all over the world should use it. Hearing people are so silly.)  (Also those manual codes do exist and have their own substantial place in the whole culture-language-history thing (see below) but that's categorically different than ASL or LSQ or DGM or whatever particular sign language a deaf community uses.)

Anyway: each sign language is a distinct language. None of them are linguistically related to whatever spoken language(s) might be used in the same geographic area. Being distinct languages, sign languages also have distinct (1) lexical items (2) grammatical structures (3) tendencies and constraints (etc.) whatever else you think of when you think about languages being different from each other. Speaking of which, yes, there are dialectal differences, yes, you do have a hearing accent if you recently started signing, no, it is not easier to learn than another spoken language, no, you will not be fluent after taking one class.

Start with some first principles and think things through, huh?

(I realize that this one is probably somewhat/very tied to hearing USians specifically having strange and bad ideas about language and the ability to use more than one. All y'all have an extremely warped sense of normal, globally speaking. Most people encounter people using other languages on a regular basis. Most people know more than just one way to communicate. Most people do not think that the world revolves around them and their bizarre emotional attachment to English First and English Only. It is way weirder to imagine that all deaf people all over the world somehow communicate in the same way than it is to imagine that there are lots of different sign languages and most of them are mutually incomprehensible.)

 The moral of #3 is that ASL is a language and if you want to learn it you will have to dedicate a large amount of time and energy to the project, and it will take years. Just like if you decided to learn some other spoken language.

4. There's a ton of history that you don't know about. Obviously individual knowlege of and interest in history varies as widely among the deaf as it does among the hearing, but there's a big chunk of deaf-specific history that is common knowlege in the deaf world and that hearing people have never encountered. In the US, that history centers around deaf education, and it includes a lot of trauma, and it is not resolved trauma. Education and communication and access to information are all issues that are far more important to deaf people than to hearing people. We can't take any of those things for granted. We have been excluded and sometimes ostracized by hearing people, who blithely sail along expecting deaf children to learn to read and write in a language they can't hear, and deaf people generally to both do all the work of lipreading/speaking and also take all the condescension and pity for not doing them the way hearing people do (and all the blame when miscommunications occur). These are emotionally charged, culturally significant topics. You are going to put all your feet in your mouth, all the time, if you don't acquire a basic understanding of this stuff, stat.

I am not sure what the moral of #4 is. Know what you don't know, I guess. Maybe "acknowlege this gap in your understanding of the world, and be careful around it."

In conclusion: Everything on this list is basically looking at the same knot of language and lack of access from different angles- if deaf people had always been fully included and society had always been fully accessible, deaf (also other disabled) people would not seek each other out to create their own little friendly accessible pockets in the world. If you're a US American and you've never met a deaf person before, you have probably never encountered a language barrier. (Or if you did, it probably made you irrationally angry such that you called the cops because somebody was speaking Spanish near you. Hashtag AbledsAreWeird.) I'll give you the benefit of the doubt and assume you are an otherwise woke human being with a decent amount of awareness re: racism and civil rights and other ongoing struggles against the patriarchy- feminism and LGBTQ+ rights and classism and whatnot. It has probably not crossed your mind, up until now, that deaf people (and disabled people generally) are also an oppressed minority group who have their own specific cultural and historic and linguistic norms and expectations and trigger points. And that's mostly not your fault. The patriarchy is ableist and audist as fuck. But, now you know, and, as with the other -isms and anti-patriarchal struggles, you should not rely on your deaf friend to teach you all about this interesting new set of ideas. Even if your deaf friend is patient enough to socialize with hearing people in general, she might be very tired of having the same Intro-to-Deafness conversation, over and over, with every clueless hearing person in her life (hint: I am very tired of this.) So read up on that shit.

(confidential to my special man friend: hey, baby, the general surliness of my tone here is not directed at you. It is primarily for comedic effect. However, do read up on that shit.)

Also the entire world is falling apart around us, but that's happening to everybody

Two significant changes took place in my life over the summer.

1. I got stage 4 cancer
2. I got a boyfriend

They happened almost simultaneously, and both situations progressed very, very quickly. It was an overwhelming summer.

The cancer is pretty bad, as cancers go. I'm in the middle (week 13 of 20) of a lot of chemotherapy, which will be followed by surgery, which will be followed by 10 weeks of daily radiation. The prognosis is not great! Luckily (?) I was already very good at being sick all the time and had already redesigned my life to accommodate that, so, while difficult, the cancer has been less disruptive than it would be for most people. I feel terrible all the time now, instead of just sometimes. I'm mentally/emotionally treading water until March, when my situation will be reassessed.

The boyfriend is pretty good, as boyfriends go. The parallel development of our burgeoning love and my cancer diagnosis made for a weird, intense start to the relationship. As far as I can tell, we are both handling things as well as can be expected. The interesting stumbling blocks so far have all been related to the deaf/hearing divide, rather than the cancer. He likes to talk a lot, and to talk about (and make) music, and I like people to use ASL instead of making me lipread, and most of my friends are deaf. It's been a pretty long time since I had to do an Introduction to Deaf People at anyone and my relevant skills & habits are all rusty. (Plus I have cancer; I'm very tired all the time). I'll probably just make a blog post about it and then send him the link; that's not avoidant or lazy at all, right?

Don't @ me

The invention of the Sign Language Glove is some sort of periodic dudebro phenomenon that occurs spontaneously every year or two, like cicada broods or Old Faithful. Inventors and tech writers are helpless, like moths slamming their empty little heads into lightbulbs, as they breathlessly explain that now, at long last, Deaf people will finally be able to communicate with hearing people without resorting to interpreters, gestures, ASL classes, phones, or pen & paper. 

This is a pair of gloves that could translate sign language into speech or text. pic.twitter.com/eCaHOzzkkY

— Physics & Astronomy Zone (@ZonePhysics) May 31, 2019

All we'll need is this expensive and unwieldy device that can provide slow, limited, inaccurate one-way conversion of signs to text or speech- because the overriding problem for Deaf people trying to communicate with hearing people is DEFINITELY that the hearing people can't understand us, not the other way around.

Seeing things

One of the symptoms of my ridiculous neurological disorder is that during severe episodes, I sometimes hallucinate. Not like being high or on mushrooms hallucinating- I’m fully conscious and sober and aware of what’s going on. So the first time was terrifying but eventually I got used to it and now, for the most part, it is a manageable (if weird) symptom.*

I used to think about hallucinations a lot. Somebody would get arrested and be in the news and it would turn out they had hallucinated something or other, or it would show up in the plot of House, or whatever. I thought about it because I didn’t understand why it would be a colorable excuse for whatever thing they’d done. I imagined hallucinations to be some sort of wavy, semi-transparent projections, basically like the Leia message to Obi-Wan. I imagined "hearing voices" to be like hearing a voice sort of in the back of your consciousness, narrating or coming up with ideas or singing an annoying song, as we do. Surely one could just think critically about the situation, realize this was not real, and carry on accordingly.

Then I started having actual hallucinations. They are not like that. They look and sound** and feel exactly like real things. I cannot tell the difference between a hallucination and reality (unless the hallucination is a glowing orb floating through the air or something else actually impossible). Most of the time, I see people standing around or walking, or hear a dog barking, or feel someone tapping my shoulder. Things that could, and do, happen in reality. So even though I know I’m hallucinating, I don’t know which parts of the world are hallucinations and which parts are real. I have to get a second opinion if I hear a loud crash. When I repeatedly felt kittens running all over me, jumping up on the bed and then leaving, I had to ask J if they had recently adopted a bunch of kittens or were fostering or cat-sitting or something. (They hadn't and weren’t.)

One time, I woke up in the middle of the night and there was a person standing in my doorway. It was dark, so I couldn’t see the face, and I had no idea if it was someone I knew checking on me for some reason, or a dangerous intruder who had broken into the house, or a hallucination. I froze, and could not figure out a response that would be appropriate for all three scenarios. In the end I threw a tennis ball, to see if it would bounce off the person, hoping that a friendly person would forgive me and that an intruder would not be affected in any consequential way. (It did not bounce off the person, who was a hallucination after all, but did bounce down the hallway, which the housemates found unsettling.)

So, for the most part I don’t hallucinate impossible things that are easy to identify as hallucinations. I see and feel and hear things that might actually be happening. I’m aware that I’m hallucinating, but I have no idea what’s real and what’s not. That is a bizarre and scary and sometimes embarrassing position to be in. I generally just go to bed and hide/sleep until I’m over it, because trying to interact with the world is overwhelming and exhausting.

I start out from an extremely privileged position. I grew up in a stable, safe environment. I did not experience any traumatic events as a child. I did a ton of therapy and got to a high level of self-awareness. And most importantly, I know the hallucinations will stop. My episodes of illness last a few days, and the hallucinations typically only last 8-10 hours. If I wait it out, it will be over, and I will be back in reality for the next while. I have the option of hiding/sleeping until it is over.

If those things weren’t true, I would absolutely be a person who[m] society would deem Crazy and Dangerous. There is no way I would be able to maintain any sort of objectivity long-term; I would abandon the attempt to distinguish between hallucinations and actuality, and I would give up on the idea of interacting with people in a socially acceptable way. I would make everyone very uncomfortable. I would end up in prison, or a hospital, or homeless, or dead.

I think another key aspect of my privileged position, in this context, is that I’m deaf. (Woo! Deaf Gain!) If I hear understandable voices, I know they’re not real. If I hear something that sounds like what I can hear, I can take my hearing aids out to check. But even when I am absolutely sure that they are not real, the sounds are incredibly disruptive and unpleasant. It’s hard to think about other things. If I were hearing, it would be impossible to know which sounds were real, and there’s no way to throw a tennis ball at them to find out. If the voices never stopped (if I didn't know I'd get a respite after a few hours), I would eventually start interacting with them and following directions and believing, despite "knowing" otherwise, that they were real. I would lose track of which people I could admit to seeing/hearing and which people were secret, and I would never be certain that other people could see or hear what I did. I could easily become convinced that there was some sort of implant in my head or that I had some psychic connection to aliens or was receiving prophecies or something, anything, to explain my experience. Humans make up stories to explain all the time; it’s what we do. Admitting to being a “crazy” person is something we fight against, hard. Society doesn’t help; we live in a world that is extremely hostile to disability. The hallucinations feel very real. An extremely improbable conspiracy theory is much easier to believe in than that your brain, your mind, is betraying you to such an elaborate, realistic, extent.

Anyway. This all has given me a very different perspective on people who experience hallucinations and sometimes manage them in socially unacceptable ways. Obviously I do not know what it’s like to have any specific mental illness, or to have been trying to manage it for years and years. My perspective, and my brain’s neural pathways, are built on very different backgrounds. But I have more insight, and a lot more empathy, than I did previously.

I still think about hallucinations a lot, but instead of wondering what they are like, I try to come up with replicable systems for dealing with them. (Other than keeping a bag of tennis balls on hand all the time.) I have some strategies for myself, but I’m not the typical experiencer. It would make things so much more pleasant and less frightening if there were a viable, systematic strategy for managing the situation. (I am aware that psychology and psychiatry have been working on this since they were invented, but I’m not talking about medicine, or something to make the hallucinations go away. I’m talking about something to use to deal with the hallucinations when they are there, while remaining safe and calm.)

I haven’t come up with much, yet. But at least (I think) I know more details about what the problem is, now.

Brains are very mysterious.



*it’s not my weirdest symptom. A day or two before major episodes begin, water starts to taste sweet to me. It tastes like I’m drinking sugar water. No doctor has done anything but raise their eyebrows at me when I tell them this, so I assume it’s not a signifier of some catastrophic neurological event. It is useful, on the one hand, because it gives me some warning. I can do a bunch of shopping and cleaning and laundry ahead of the event. On the other hand, it is very annoying to not be able to just drink a glass of water. Way more annoying than I originally thought it would be.

**Hearing and deafness are complicated, but the gist is that I can hear some things. I don’t just live in silence all the time. What I can hear is mostly not very useful, so I mostly ignore the input except in specific situations. Some of my hallucinations are like what I could hear when I was hearing, and some of them are exactly like what I normally can hear now.

An inaccessible play about the importance of accessibility

I started a fight on Facebook, but I'm not sorry.

Open letter to everyone involved in the production of The Monkey Queen:

I’m writing to express my deep disappointment that this production involves the use of American Sign Language (ASL), but did not involve any consultation or collaboration with any members of Missoula’s Deaf community, and does not include any performances with ASL interpretation. The show looks like a really interesting production and it is great to see deaf characters and sign language included in public performance art. However, this particular production is problematic on two main counts: the “ASL Consultant” is neither deaf nor fluent in the language, and none of the shows are accessible to the Deaf community.

There are many deaf people in Missoula, including several with dance/performance backgrounds. Hiring a beginner-level hearing person as the ASL consultant both eliminated a potential role for Deaf artists to be involved, and resulted in inaccurate and poorly performed signing. (I have not seen the show, and don’t plan to- I do not support inaccessible theater. However, preview videos available on social media provide plenty of evidence for this assertion.) The person listed as the ASL consultant is not fluent, is not a member of the Deaf community, and is not qualified to provide consultation on theatrical ASL. A Deaf person should have been hired for the role.

The fact that no interpreted performances are scheduled adds insult to injury. The publicity materials for this work include the use of ASL as a selling point, but the work did not involve collaboration with ASL users and is not accessible to them. According to Matt Loehrke, the writer/director (and the Education Director for the Missoula Children’s Theater), The Monkey Queen provides “a young audience an introduction to these styles of performance, both enlightening them to ASL performance and empowering them to explore ASL after the performance.” Unfortunately, it is clear from the lack of accessibility that Loehrke’s conception of “a young audience” does not include any of the deaf or hard-of-hearing children in the Missoula area.

Both of these issues- the lack of a Deaf ASL consultant and the lack of accessibility for the performances- are deeply problematic. Deaf people are a historically and currently marginalized group, and using our language as a selling point without collaboration or access is an act of linguistic and cultural appropriation. Again according to Loehrke, “The use of ASL is a pivotal plot point that demonstrates enlightenment and empowerment.” It would be nice if enlightenment and empowerment were also available to members of the community being represented. The show should have had a deaf consultant for both content and ASL, and should have planned on providing full access via ASL interpretation for all performances.

I hope that you will consider an apology to the Deaf Community for the cultural appropriation in this work, and that in future projects you will consult with actual members of the cultures you are representing.

Cecily Whitworth

ASL translation:


Show's page:
https://www.facebook.com/events/2285630008345681/

Dissatisfied

Remember last year when I went all Discourse Analysis all over everything and explained about how expressive Josh Castille's face is and how much I love his depiction of Eliza having hearts in her eyes? Well, I do. I watch that video all the fuckin time. (Lindsay said she was going to show it to a class to talk about constructed dialogue until she realized that her students couldn't keep track of two characters in a single timeline with no narrator, so she didn't. But anyone who is teaching advanced ASL students and/or linguistics should consider it.)

Now there's a new and improved one




There are a tiny number of places where I liked the first version more- notably, the scene of Angelica introducing Hamilton to Eliza, and then soon after that the line "what might have been if I hadn't sized him up so quickly". But overall this is a really, really skilled  translation that is even more beautiful than the original one. It is extremely fun to watch, with or without the sound on. And I am still in awe of Joshua Castille's role-switching virtuosity.

NB1: in addition I love his suit.

NB2: Alexander is a lot taller in this version. I'm curious about that change!

NB3: This video is a great example for talking about the difference between translation and interpretation, and also a great example of a deaf person making an excellent translation of a song. Hearing people love to get all worked up and enthusiastic about the "signers" doing songs at concerts and on YouTube and whatnot, but those people are nearly always interpreters (not translators) and nearly always hearing. This means that they are converting English to ASL in real time (so a time lag is inevitable) and they are far more focused on meaning than form. (the primary goal is accurate transmission of what the lyrics say, not of whatever rhyming or assonance or other poetic stuff might be going on.)



Translators, on the other hand, get the material and work with it slowly. They take the lyrics (or the poem or whatever) and think hard about how to best respresent the meaning and have the ASL be poetic instead of prosaic. This process takes a long time and a lot of practice and revision, and a deep love and understanding of ASL, and the willingness and skill to create poetry. The result is ASL that is as fun to watch as the English input was fun to listen to.



Most hearing people (even hearing people who know ASL, and know and respect deaf people and their culture, and even many interpreters) and many deaf people, do not, deep down, think of ASL as a real language. One of the ways I know this is how many conversations I've had about translation choices for songs and poems. They are so removed from the English! Why are they doing it this way? The ones on YouTube that hearing signers make, sign-for-word, are so much easier!



But imagine that you know another spoken language (or maybe you don't have to imagine it! I salute you, my friend.). Contemplate the ability to communicate fluently, and/or interpret in real-time, in that language, and compare it to the ability to come up with a quality translation of an English song or poem. Obviously you won't be able to just switch out the English words- that's not how languages work. And some of the idioms and metaphors will need to be replaced. But most crucially, the form will get all messed up. The rhymes won't rhyme, and you won't have the same number of feet per line, and you'll have to build up everything else that makes a poem poetic, from scratch (for songs, while also making it match the rhyme and rhythm of the English version.)

(This is why "translate a song into ASL" is a terrible, awful, very bad idea for ASL teachers to assign as a student project. The students will all do a very bad job, for one thing, but also it further enshrines the idea that translating something into ASL involves word-for-word or line-for-line substitution of English, rather than intense creative work.)



I personally think translating poetry is a nearly worthless enterprise (or I guess I just don't think it makes sense to call the result a translation. It is a new English poem based on whatever starting material.) but my point is that it requires a very high level of skill, and translating songs adds even more difficulty because now you have to match the music, and so it is really impressive when people do it so well like all these videos I linked, and really dispiriting when other different people flood the internet with word-for-word versions by hearing signers instead of these amazing productions by deaf artists.

So. The struggle to get society (including many deaf people) to internalize the idea that ASL is a language, and not a code for expressing English, is not over.

NB4 Yes I do know that NB3 was basically the whole blog post. You're not the boss of me, shut up.

Special is as special does

Hey! Remember that time, more than a year ago, when I was all "sadly, I am quitting my volunteer position at Special Olympics of Montana [SOMT] because Special Olympics of Montana has decided they are going to die on the "deaf people don't deserve interpreters" hill and I won't be a party to it"?

Well, the initial hearing for the lawsuit described therein is JUST NOW wrapping up, because SOMT has a lot of extremely unusual takes on many things (not the least of which is, which makes more sense, to employ lawyers for more than a year to fight a PR disaster of a lawsuit, or to just pay for some fucking interpreters like the all-inclusive charitable sweetheart of America we claim to be? pardon whose-ever French you take that to be) and the number of assessments and depositions and delays is approaching Dickensian-copyright-infringement level (I mean if reality could infringe on copyright and also if Dickens were not in the public domain).

(Write a more ridiculous run-on sentence than that, I dare you.)

Anyway, this is just a note to say that the underlying premise of the defense is that people who are both deaf and intellectually disabled do not, according to SOMT, deserve the same access to communication and information that non-deaf athletes get, or that non-intellectually-disabled deaf people get. SOMT is so dedicated to this principle that they are willing to spend years and who knows how much money in court rather than just hire some interpreters like a non-evil nonprofit organization would do.

Please keep in mind that, according to their very own website, SOMT ran a $1 million surplus in FY 2016 and a $3.6 million surplus in FY 2017.  Also keep in mind that local programs ("teams" in regular English) are expected to cover 100% of their own expenses, including travel, facilities rental, equipment, and registration fees. Finally, the entire organization, barring a few state-office administrators, is staffed by volunteers.

A number of people have asked me, "What is the National Special Olympics organization's position on this?" and "Are the Special Olympics organizations in other states also evil in this particular way?" and I do not know the answer to either question. I encourage you to investigate! Particularly if you are a reporter for some sort of nationally-recognized news outlet!

What I do know is that this particular organization, Special Olympics of Montana, claims to "[change] lives through the power of sport by encouraging and empowering people with intellectual disabilities, promoting acceptance for all, and fostering communities of understanding and respect."

And what I also know is that refusing to provide interpreters for deaf athletes and volunteers in the first place, and then digging your heels in to fight the inevitable lawsuit inspired by that refusal, are both actions that are fundamentally incompatible with encouraging/empowering people, promoting acceptance for all, or fostering understanding and respect.

Unless you think deaf people, and maybe intellectually disabled people, aren't actually people. In which case you maybe should be running a different nonprofit.

Progress report

Lindsay came to visit! If we had had our act together, we would have recorded a vlog of some sort (dog, grog, and/or Yule Log) or at least taken some documentary photographs of ourselves together, but instead we just drank a ton of beer and gossiped about Academics We Have Known. It was a lovely time.

Meanwhile, Big weighs 117 pounds these days but still can't get into a car without a stepstool. She remains inexplicably terrified of a number of unpredictable things, but also prone to gallop up to every person she sees, to lean on them and gaze adoringly into their face while they tell her how pretty she is.

I made another queen-size bed quilt and may never make a bed quilt again. Or at least not until I have an actual quilting machine. They are nice to look at but an unreasonably long and boring project, I've decided.

More later, I need several naps now.

Apocalypse soon

I said something flippant about how the world as we know it is not going to last much longer. (I believe this, although I have no specific predictions.) A friend who is cheerfuller than I am argued a little and then said "but don't you think if you had kids, you'd think differently?" (She has kids.)

This is crazy talk! I certainly hope not! The strangest part of the question, to me, was the implication that I should consider a hypothetical scenario in which I were more likely to have a biased assessment based on wishful thinking, and then use that hypothetical biased assessment instead of my current one. What!? No! I try hard to keep my current level of bias and wishful thinking out of my assessments of things! Why would I add more, just to come up with a nicer outcome? (...oh. Just to come up with a nicer outcome. This is how religions are invented, people.)

Anyway I said "no, but I'd probably be a lot more upset about it" and then we talked about other cheerfuller things.

***

More recently, someone else was telling me that they try to never vote Democrat or Republican. If there's a Libertarian option, the go with that. (It's Montana, so there usually is). If there isn't, they pick Republican.

I said "that makes me think you never read the news and you have no idea what's going on in the world. Have you noticed what the Republicans are doing?"

He said "What about what the Democrats are doing?"

I said "What are the Democrats doing?"

He said "They're dividing us! With their... words and arguments!"

I said "That sounds like something you heard on Fox News. Maybe you should try some other sources."

He said "I'm just kidding. And I don't watch Fox News."

I don't know which part he was kidding about, but this conversation did not change my opinion about how the world as we know it is not going to last much longer. (It did make me glad there are Libertarian options for nearly every race here.)