Updates and a poem

It’s been over a year since I wrote a blog post. I won’t apologize, but you can trust that life got away from me and I regret the long absence! I am hopeful that I am in a better place now to write posts more regularly again.

I didn’t actually fall off the face of the earth a year ago, however: I’ve managed some other advocacy type things in the meantime. Here are some links for your perusal followed by some additional life updates:

I co-authored a research study on the experiences of speaking autistic adults who also use AAC.

If you don’t have access to the journal article, you might enjoy our presentation on the study’s results at the 2021 AAC in the Cloud conference.

My friend Sam convinced me to start a podcast. You can listen to AAC Town here and read the AAC Town transcripts here.

I was also a guest on an established podcast called Pigeonhole. Listen to or read our conversation about the stigma around digitized voices.

I appeared in Communication First’s short film “LISTEN” which was released on the same day as Sia’s movie “MUSIC” as a counterpoint that features actual nonspeaking autistics.

I most recently recorded my contribution to a panel at the upcoming Reinventing Quality conference. The topic under discussion is equitable access to healthcare for AAC users and people with intellectual and/or developmental disabilities. I’ll be in the chat while our session plays on August 9th to answer questions. 

I trialed low-gain hearing aids programmed for auditory processing problems and ended up thrilled to purchase a permanent set – expect a joint blog post with my friend soon about our experiences with this technology.

I’ve begun seeing a SLP who specializes in AAC with the goal of using Proloquo2Go more quickly, as well as using it more regularly for written communication such as texts, tweets, and emails. 

After a dearth of updates from myself, I decided to turn the Twitter wizard rock game I invented over to Zoe (of Dots and Lines). This was a stellar decision, because not only do they actually post, they post from a wider variety of bands than I ever did! Unfortunately, they were also one of our best players for Ravenclaw (also my Hogwarts house) as a participant, whereas it turns out I am actually terrible at playing the game I used to run. Thus, we are now perpetually trying to catch up to Slytherin. Anyway, follow Zoe and ping one of us for instructions if you’d like to play!

I suspect this list isn’t exhaustive, but I think those are the main things that have been nagging at me as “I really ought to tell my blog readers about X” over the last year. 

The last thing I’ll share in this update before the promised poem is that I just finished 14 weeks of of a partial hospitalization program for my eating disorder relapse, and I’m feeling pretty optimistic about achieving/maintaining long-term recovery from that struggle. (You may know that there’s a frequent overlap between autism and anorexia, and that trans folks are at higher risk for eating disorders as well.) I wasn’t sure I was going to mention it here, and I may never actually put up a whole post about it, but I think this gives context for the poem I’d like to post. Which, here’s that, written in a month into treatment:

i struggle to break ground

these roots still infant – 

it’s difficult to build momentum

and push up into the spring air.

above, the shifting spots of sun beam down

and my arms grow green,

almost glow – 

spores on the underside

just slightly rough,

tan, perhaps shrinking,

under hypothetical human touch.

i was born curled

and this season tugging at my tips,

begging me to unfurl,

can seem almost harsh 

in its pull.

is this growth what i want?

was i always meant to span outward, upward,

to change shape and size and form –

not smoothly, perhaps, but steady?

is this springtime meant for me?

maybe every day is my birthday:

digesting not just soil and water

but the sheer sweet light of each dawn.

maybe i am ready to reach up – 

for real –

to grow into myself,

to greet the world open

expressing what i experience

and experiencing what i express.

i must remember this forest

was built to be my home.

i am not the only fern struggling up,

and even the trees’ windy whispers

and the birds’ hopeful songs

are shared with me on purpose.

grow, fiddlehead,

even if your fingers ache

and your base swells so far out.

grow, for these woods 

are only blessed by your green.

and someday

maybe someone

will walk by

and see you

for who you soon will be,

who you already are,

and who you always were.

how will you know?

they will smile.

What it means to be institutionalized

Once again, it’s been ages since I wrote! Apologies. Here’s a tidbit, albeit not very long or well-edited:

Content warnings: institutionalization, self-harm

I tweeted a brief version of this while inpatient the other day, and judging from people’s reactions it’s not actually common knowledge that some of these things are the reality of being institutionalized. That is, if you’ve never been there, you might abstractly talk about deinstitutionalization, but… you don’t know what you’re talking about. No offense. So here is a list of some of the things I am not allowed to do for myself, or whenever I want, or at all – while inpatient. Reasons include “my own safety”, relevant items not allowed on the unit at all, staff convenience/availability, or a myriad of other excuses. Not all of these things will be applied to every institutionalized person, but I want to give you examples, because it generally portrays the key feature of every institution: an imbalance of power, where “caregivers” are in almost total control of the disabled people they supposedly help. This powerlessness contributes to the trauma of coerced treatment.

Please note that I’ve probably spent a total of under a year of my life hospitalized, so someone who has more extensive marginalization in this area may have had significantly worse experiences than me.

Things I wasn’t allowed to do for myself, whenever I want, or at all:

• watch TV
• turn on TV’s captions
• use computer/internet
• charge phone
• use phone
• wear jewelry
• do laundry
• choose clothing
• access my money
• access my personal belongings
• choose my stim toys
• choose my sensory aids (ear defenders, weighted blanket, etc)
• choose self-injurious stims
• choose toiletries
• get a haircut
• dye my hair
• put on nail polish
• shave
• clip my nails
• shower
• take a bath
• use the bathroom
• decide to take a PRN
• take meds
• cook
• microwave snack
• open fridge
• choose food
• eat
• talk to doctor
• talk to nurse
• talk to social worker
• talk to lawyer
• see my cat
• see my friends
• use tty/text relay/vrs
• communicate in sign language
• charge communication device
• use communication device
• go outside

… or choose to leave.

Timesuck: disability edition

Content warnings: skinpicking, mention of eating disorder

 

This might not be interesting to other people, I’m not sure, but I wanted to track and annotate how much time I spend on being disabled each week. See, I’m not sure abled people understand the timesuck that can happen with disabling conditions (and with navigating ableism). For this experiment, I didn’t include activities that were optional such as disability advocacy, but moreso things that I either can’t avoid at all or would put my health at risk to not do.

The total week came to 32 hours and 25 minutes, although most of that was the extra sleep I require (this is a combination of bipolar management and meds side effects) and the extra time transit takes compared to if I was able to drive. Here is the week’s totals broken down:

Extra sleep: 18 hours. I compared to a healthy person’s potential eight hours, although adult average is apparently more like seven. I didn’t track this down to five minute increments since it’s hard to tell exactly when I fall asleep, but instead approximated, often rounding down. Certainly there are tons of abled people who would love to sleep as much as I do, but for me it’s necessary, and not necessarily enjoyable.

Extra transit: 7 hours and 25 minutes. I compared my actual walk/bus/train trips with Google’s estimates of driving times. This is an example of another thing I do that some abled people do as well, it’s just that I literally can’t avoid it due to disability. I am so not capable of driving, even if I had the money for it. It’s part of my experience of being autistic.

Treatment: 5 hours and 30 minutes. This includes appointments, pharmacy, transit for those, taking meds, and symptom tracking. I’m also technically supposed to go to group therapy two hours a week but haven’t been doing that lately, which is probably unwise.

Communication supports: 1 hour. This was time spent preprogramming my device for upcoming activities (see my posts about AAC here). I didn’t count the extra amount of time any given conversation takes when I’m typing, as I had no real way of estimating the difference from conversations where I speak or sign the whole time.

Actively engaging in behavioral symptoms: only 35 minutes, yay! This week all of which was devoted to skinpicking. I used to spend 30+ minutes/day on that alone, but have been doing much better on all obsessive-compulsive spectrum symptoms lately. The total amount of time I spend on symptoms can be much higher during bipolar episodes, and almost automatically goes up to 4+ hours/day during acute eating disorder relapses. I decided not to count engaging in special interest stuff under this category even though that’s technically a “symptom” of autism, because for me it feels like mostly a positive autistic trait – it enriches my life rather than takes away from it.

Coordinating benefits/accommodations: 15 minutes. There are definitely weeks this takes an hour or much, much more. Nothing like being your own primary case manager.

Okay, given, I don’t have the spoons (spoon theory) necessary to actually work for 32 hours/week, but in theory look at all the time I could direct towards productivity if I was able! I would be much less poor. Or not to mention life would certainly be more fun if I could spend that time on crafts or special interests. I often resent the amount of sleep especially – can you imagine having 18 more hours a week than you have available right now to do whatever you wanted with? In truth, I can only barely imagine it. I have been living with my disabilities for so long that making this list was somewhat surprising. Advocates do frequently point out that being disabled (and poor, too) is a full time job, but I wasn’t sure before this data collection whether my own experience added up to that. It certainly got close!

Well, I don’t know if you found this as interesting as I did, heh, but maybe it gave you new insight into one disabled life. If you’re disabled and have ever done a tracking project along these lines, I’d love to hear about it! Feel free to comment below.

Letter of grievance re: confiscated AAC

Today’s blog post is a version of the letter I sent to two different hospitals after having my communication device taken away on their psych units (I just edited for identifying details mostly). I know some lovely speech therapists and AT specialists who generously co-signed with me, which I think added to the impact, but I hope that this sample letter will be useful for someone as an individual even if you don’t know any professionals who can back you up. Please feel free to use my wording or adapt it to fit your individual situation if you are thinking of filing a grievance somewhere about a similar experience! And honestly feel free to contact me if you want someone to look over your version or otherwise bounce ideas off of if you have had your communication supports taken away in any setting and want to file a grievance, I’d be happy to try to help.

Here’s what I wrote!

“Dear Patient Relations,

We are writing to express concern about the policies at your hospital that disadvantage patients with complex communication needs (CCN) and other assistive technology (AT) requirements.

At this patient’s last visit, their communication device was confiscated for the duration of their stay, preventing them from adequately getting their needs met and discussing their symptoms, treatments, and basic needs to staff. It is terrifying and frustrating to be in the midst of an autistic meltdown or psychiatric crisis and not be given the tools needed to ask for help. Expecting patients in this situation to substitute pen and paper for their usual communication device is not an adequate replacement; while some people who use AAC (augmentative and alternative communication) are capable of utilizing this surrogate communication method, others of us need options such as selecting pictures that represent whole words, or using sign language. Some of us need access to a variety of these options at different times, and we may use speech part-time as well, depending on our abilities at any given point. These intermittent abilities should not be used to invalidate our need for all of our usual options to be available to us at all times, as the individual communicator is the only one who knows what format we require at the moment. The governmental guidance on meeting the Americans with Disabilities Act’s legal requirements for providing communication accommodations specifies, “when choosing an aid or service, Title II entities are required to give primary consideration to the choice of aid or service requested by the person who has a communication disability”.

In this patient’s experience, staff defined their assistive device as a “personal belonging” subject to the same rules as clothing, books, and technology that doesn’t serve as AAC. Yet eyeglasses, another form of AT, were not subjected to this definition – and we assume hearing aids, wheelchairs, and additional AT would also be permitted here. Targeting communication devices as disallowed in this treatment environment is unfair to many patients with developmental disabilities, speech/communication disabilities, and hearing disabilities.

Staff gave multiple excuses for disallowing this patient’s communication device, and we would like to address each one.

– Device has a strap that could be used as a dangerous ligature: Strap is removable.

– Device has a camera function: Tape can be placed over the lens and the patient required to sign a contract stating that they won’t use the camera function and understand it will be confiscated if they were to break the contract. Although that solution should assuage your concerns, we’d like to point out the ban on all devices with cameras in this unit is already inherently discriminatory to mental health patients. Patients in physical health units are allowed their devices that have cameras, even if they are walking around the hallways or otherwise in viewing distance of additional patients. The idea that being filmed on a psychiatric unit would be inherently more shameful or damaging reinforces stigma against mentally ill people. It’s greatly concerning that mental health patients are being treated by people who buy into that stigma.

– Device might get damaged: Again, so might glasses, hearing aids, wheelchairs, or other AT that you allow. Additionally, patient could sign a contract taking full financial responsibility for any risk. You might not realize that our devices are at high risk of damage in our outside lives too – even just rainy weather requires protection – so many of us choose extremely resilient cases and harnesses for our devices that protect them adequately. It should be solely our decision whether we are willing to risk keeping it with us in every area of your hospital.

When the solutions above are not adequate for a certain brand of communication device, the hospital needs to provide an equitable alternative. A speech pathologist used to working in hospital settings should be consulted to assess the patient’s needs and provide an adequate substitute for their usual communication method. D/deaf patients and other communicators who use sign language should have access to an interpreter at all times. We highly recommend that you have a laminated letterboard and a picture board designed for acute psychiatric settings on the unit, to serve the needs of any patients who come in with a need for AAC but don’t have their own device or light tech communication supports with them. And it should be noted that the compromise decision offered at this patient’s last visit of being allowed to use their device only when at the nurses’ station and only when staff had time is not adequate. You do not place duct tape over the mouths of other patients anytime they’re not at the nurses’ station. Meanwhile, the fact that that unfair compromise was offered only after the patient was severely distressed by having to advocate for themself on paper is troubling. They did their best to communicate the above points via the limited communication method they were forced to use, repeatedly citing the ADA and requesting a speech therapist consult, but ended up in complete meltdown before even the compromise was reached. This is the opposite of psychiatric stabilization you are endeavoring to provide.

We hope you will consider all these points carefully and decide to:

1) Change your policy to allow all assistive technology (AT) everywhere in your hospital

2) Carefully communicate this policy to all staff so that patients are no longer required to spend so much energy advocating for their rights while in the midst of a crisis. As this local patient is relatively young with a chronic mental illness, it is somewhat likely they may need to visit your hospital again, and we would really appreciate it if you could send a copy of any updated policy to us for them to bring with them in the future to easily demonstrate to staff that their communication device is allowed.

If you would like assistance in acquiring a basic laminated letter board and picture board for your facility, we are happy to help.

Thank you for your consideration,

[signature]”

…Results from this letter was positive from both hospitals! One said my device will be allowed in the future and they are making sure all their emergency rooms across their hospital system have communication boards, and the other said my device will be allowed in the future (with staff supervision – meh, but still better) and that they have done staff training as a result of my grievance.

Have you had your communication supports taken away before (in any setting)? Please feel free to leave a comment below. And like I said, you’re welcome to contact me via this site or track me down on Twitter if you have a similar situation and hopefully I can offer some support as a fellow self-advocate who’s been there.

Unaccounted for: impairments, disabilities, and the social model

I’m sure many people have written about this before, and I think I’ve even touched on it in another post, but I want to share my thoughts about how I relate to the social model of disability. For those unfamiliar with this model (versus the traditional medical model), here is a journal article or a more cognitively accessible description.

So, first off: yes! Yes yes yes, a thousand times yes. We absolutely are disabled by society’s lack of accessibility. This is such a helpful framework for talking about disability justice and changing the world. And at the same time, secondly: the social model doesn’t fully account for all experiences of disability.

This seeming paradox is true even for me as an individual. There are aspects of my disabilities that are essentially societally created – ways that my brain is not accounted for by the systems, institutions, and individuals around me – but there are also aspects that are just sheer intrinsic impairments, things that would still disable me even in a perfectly built anti-ableist world. This is mostly true of my mental illnesses, but also (maybe controversially? at least in some circles?) of my experience of autism.

Sensory processing differences are a significant impairment, for myself and many other autistic people, that can’t entirely be accommodated. The sun may be too bright even with sunglasses, even the quietest train may be too loud despite ear protectors (although I’ll note that I’m currently on a train with layered earplugs and ear protectors and it’s positively glorious), we may have restricted food intake due to taste and texture sensitivities, and our auditory processing might not be very good even in environments with little background noise. Executive dysfunction can also be significantly disabling, even for those of us with access to assistive technology and/or support people. And personally, I just periodically run out of capacity for social interaction. Using AAC helps moderate that, and spaces that use color communication markers help greatly, but I think even if those accommodations were constantly available and affirmed I would still sometimes just not have the spoons (description of spoon theory here) to interact.

My mental illnesses are even more clearly unaccounted for by the social model. I doubt there is any combination of medicines or other psychiatric supports that would permanently prevent the pain and consequences of future bipolar episodes, and I have long since concluded that I am likely to have some degree of disordered eating (and/or associated distress) no matter what treatments I try. It helps prevent mood episodes that I don’t have to work to survive right now, and it would probably help immensely if I had in home supports to help me prepare food in a more normative way, but there aren’t accommodations or societal changes I can think of that would erase these disabilities entirely. Same goes for PTSD – some of my triggers are uncommon enough that they wouldn’t generally show up in a list of content warnings even if the entire world was doing their best to content-warn everything. And even if everyone around me were conscious of loud noises and sudden movements, nature itself (not to mention civilization) is liable to startle me from behind.

Here’s the thing, though – although the social model doesn’t account for these realities, I don’t want to bounce back to the default medical model in order to explain them. Why? The medical model, in my experience, is drenched in value judgements. There is a vile disdain that seeps through when disabilities are discussed simply as diseases and disorders. The negativity goes beyond the innate distress of our impairments and enters a realm of morality, where those of us who experience these impairments are unworthy. Not only does the medical model fail to illustrate the need for societal accessibility, it shapes the vicious ableism that makes disabled people unhireable, undateable, unsupported, and unwanted.

So even where the social model fails to explain my life I refuse to revert back to the medical model to fill in the gaps. I want to retain the power to name and describe the ways I suffer, not leave the delineation up to the cisnormative, heteropatriarchal, racist, sizeist, ableist field of medicine. When I say I am disabled, that is a personal identity – shaped by both impairments and societal barriers – that transcends flat diagnostic criteria, insurance codes, and prescriptive cries of “cure!”. I see myself both surrounded by clouds of inaccessibility AND enduring other clouds that exist solely within my own mind. I am not comfortable in the world nor am I comfortable with only myself. There is an ongoing dynamic interchange between these discomforts; neither is absolute or isolated. I will not give my unaccommodatable impairments back to the medical model just because they don’t fit the social. They are MINE. I will carry them forward with me as I carve out a place in the world. The place I am carving might never be easy or enjoyable, no matter what access barriers are torn down. But I aim to make it a place in which my disabilities are acknowledged, accounted for, not as curses or demons or failures or signs that I am not a worthwhile person, but simply as parts of who I am.

How I manage bipolar disorder

Content warnings: mention of self harm and suicidality

You may know from earlier blog entries that I have Bipolar 2. This means I never get fully manic, but have episodes of depression, hypomania, and mixed states. It is this condition that I perhaps consider the most disabling of my diagnoses, I think mostly because of the gap between the social model and these impairments. I’m pretty sure there’s no combination of supports and decreased access barriers that could fully prevent me from having bipolar episodes through the rest of my life. While I am not reliably stable enough that you should consider my self-care a perfect way to prevent bipolar episodes, I have picked up some useful skills over the years that do keep me more stable than I used to be. I will tell you about some of those now in case they are helpful.

Sleep: I require extra sleep in order to function, usually ten hours a night. What is even more important than the amount is that I keep to a strict schedule, especially for bedtime. Getting too little sleep is a risk for hypomania, and getting too much is a warning sign I might be entering a depression.

Walks outdoors: Please don’t read this as the infamous “have you tried exercise?”, because it’s only a small part of my self care and not everybody finds it helpful. But it does seem for me that going for a walk every morning helps me stay sane. I am not sure whether it has more to do with moving my body, soaking up vitamin D, and/or the reassurance of routine itself that is useful. Oh, and it is a good time to listen to wizard rock, a special interest thing for me – I think engaging in special interest stuff can be a positive thing for many autistic people’s mental health.

Meds: I love my meds. I especially find antipsychotics useful for my brain, but of course “your mileage may vary”. I am usually diligent about taking pills – my emotional support animal and I have a system. I’m not allowed to feed her until I’m taking my meds – and, conveniently, she gets hungry twice a day when my doses are scheduled. Thus I can’t stall too long or skip them entirely because she’ll cause havoc until I comply with her dinner plans. Unfortunately, I am liable to skip a pill or two when I’m hypomanic, under the illusion it will keep me feeling good longer. This is a bad idea. This is a classic feature of bipolar disorder though – the brain’s wheedling that skipping meds is okay.

Moderating stress and outside commitments: this isn’t doable for everyone – if employment is your only chance of income or you have dependents, there may be stressors you just can’t get out of. For me, trying to hold a job was a huge stress (not least because it involved a lot of masking my autistic traits), and I feel supremely lucky to have gotten on SSDI. It’s also important for me to only take a class or two at a time and to be wary of adding any other new commitments to my life. Certainly having some regular activities can be nice structure/routine, but my history clearly demonstrates that “normal” amounts of work/commitments/stress/etc put me at huge risk for increased mood episodes.

Community: Everyone has different needs around amount and type of social interaction, but personally I’ve found I do benefit from some interaction with people I can relate to. This is carefully curated, however, given my autistic traits. For offline interactions, I do best when I can build friendships by seeing someone in the same time/place/activity every week. This makes the hangout much less stressful and I am better able to connect than I am when coping with unpredictable elements. I am lucky to have friends who are amenable to this accommodation. Besides that, most of my social life is online, and that suits me well. Not only is the method of communication easier than the speech people typically expect in person, but the reach of the Internet allows me to connect with people who have similar experiences as me. Through Twitter I feel like part of a larger community of queer and disabled people, and it’s good for my brain to feel like I have a place in the world.

Supports for co-occurring conditions + masking less: My bipolar episodes seem less frequent and milder over the last year or two, and I think one of the changes that has affected this is the fact that I have been able to incorporate more disability supports into my life and decrease the amount I mask my neurodivergencies. (I’m placing these components together because for me they both have to do with claiming my disabled identity, decreasing shame, and asserting my rights.) As I use AAC, let myself stim more, utilize academic accommodations, explore executive function supports, structure my life to avoid PTSD triggers, and try to find environments where it is safe to be noticeably disabled, I experience less distress. This appears to be decreasing my vulnerability to bipolar episodes. (It should be noted that it’s not safe to be noticeably disabled in many environments, especially for multiply marginalized people, so not everyone is able to make these kind of changes to their life.)

Symptom tracking: I developed a system for monitoring some of my warning signs and significant symptoms that takes about a minute a day and results in charts my providers and I can look over to discuss how I’m doing. This can help identify potential episodes early on, giving me a chance to intervene before things get too bad. The items that you choose to monitor should really vary from person to person, but the items I track are: mood on a scale of 1-10 (morning and evening), sleep, anxiety, irritability, intrusive thoughts, sensory overwhelm, self harm, suicidality, whether I took my meds properly, and whether I cancelled plans/missed commitments.

Therapy/group therapy: I’m not someone that thinks disabled people have to be “compliant” with treatment a doctor dictates in order to successfully manage our conditions, but I’ve often gotten something out of showing up for my appointments. It’s a huge cost benefit analysis, because treatment can so easily be harmful to trans and autistic people, but given my brain I kind of feel like I’ve had no choice but to risk the bullshit in order to try to glean the potential benefits. I’m lucky that my current therapist is decent. I’m not able to see him often enough for deep trauma work or anything, but he serves as a sort of check in/case management/sounding board type person that is still useful to me.

Okay, those are the major components that come to mind, but I’ll note a few extra topics that I’ve found useful at various points in case you want to look into them more: vitamins/supplements, connecting to my spirituality, peer-run support groups, dietary changes (this one’s complex for me due to eating disorder, but still worth mentioning), journaling, creative writing, engaging in special interests, and routines.

Do you have tips from managing your own mood disorder you want to share? Please comment!

“I am from”: a poem

I don’t plan to normally post poetry on here, but this piece I did for a recent school assignment contains themes highly relevant to this blog, so I decided I will share it. (I used to write poetry all the time; but it’s not really currently my thing. Not sure why.)

Content warnings: ableism, heterosexism, cissexism, involuntary treatment (including restraints), abuse, filicide, vague Holocaust reference, vague self-harm reference

 

i am from altitudes, latitudes, longitudes

towns and cities, forests and deserts

houses and apartments and tents and sleeping bags

i am from values – a childhood refusal of meat and an adolescent refusal of school

i am from habits – ink, fibers, fidgets, scars

 

but mostly, i am from people

i am from people who have been stigmatized

institutionalized

fetishized, pathologized

disenfranchised

sterilized, experimented on, exterminated

 

i am from people who have been kicked out – young rain, grimy streets

locked up, restrained – screaming the pierce of unwanted needles

policed – our clothes and bedrooms

impoverished – mountains of paperwork just to survive

shocked – pain meant to train us

to act less queer

and more neurotypical

sickened – empty pill bottles, turned away from the ER

misgendered – the hollow feeling of unseen selves

cis doctors can deem ineligible for transition

deadnamed – IDs betraying unasked-for history

the Ms and Fs written in stone

ignored – eyes skip over us, accommodations unmet

assumed incompetent – the fake syrup of “baby talk”

left to die – nursing homes don’t care to set us free

abused, assaulted, murdered – and our caregivers get sympathy

for how hard we must be

to deal with

 

all this, and my people

have chained themselves to buses

crawled up the steps of the capitol

testified in congress

occupied senate offices until dragged out of our wheelchairs

resisted arrest

voted where allowed

called senators on text relay

sued the state

 

my people have crowdfunded each other’s surgeries

bound each other’s chests and zipped each other’s dresses

taught each other, parentless, to apply lipstick and tie ties

given advice, doctorless, how to choose a mobility device

and how to use the apps that amplify our voice

we’ve taken in our unhoused youth

gotten married

ordained our own clergy

danced and performed and marched our true selves

crashed the conferences where professionals like to talk about us without us

designed the research no one else is doing to increase our quality of life

taught our teachers what are actually our real names

 

my people defy norms

loud – rainbows and glitter and flags

proud – rocking and flapping and drooling

our existence, in this world, is indeed resistance

 

so i am from everywhere my people are oppressed

and i am from everywhere we fight back

 

Credit: I don’t know who came up with the phrase itself, but I found the quote I referred to (“my existence is resistance”) on one of my favorite shirts to wear by Model Deviance Designs – go support them!

Thanks for reading.

What hypomania feels like (to me)

Content warnings: self harm, suicidality

Hypomania is often tinged with anxiety or irritability even when it’s not a full mixed state, but I’m going to start by describing the sheerly happy version.

It’s a bit of a drug. One of the closest fictional analogies I’ve noticed is Felix Felicis: everything seems to be going my way! (This temporarily feels true even about things that arguably rationally aren’t that great.) I get smiley, giddy with the sensation of the gods smiling upon me. My voice is more expressive, I speak more than usual, my words in any format are fast and possibly too excited to fully make sense, I act way more social than is generally in my nature. I feel like bouncing. I flap more. I have boundless energy to accomplish my goals, because I just know for once they are actually achievable. I’ll have a wealth of Good Ideas, which I may flit between, or I may end up obsessing over one in particular. Last time through I fixated on a sudden idea for a new novel, and proceeded to write eight thousand words of outlines and notes over the course of twenty-six hours. Over the next few days I completely ignored other responsibilities and interests, despite a lingering abstract knowledge that they were possibly important. I might not be able to explain why the ideas that are flowing are indeed good, either to bystanders or my future more sane self, they just seem very convincingly right. (I.e., I’ve just got a good feeling about going to Hagrid’s! Except, Felix sort of guarantees that your ideas will work out for the best, whereas hypomania-induced ideas are possibly doomed.)

For Muggles, I think imbibing just the right amount of caffeine begins to relay the experience. I have energy! Actual energy! My spoons do not follow their usual expiration date of 4:00pm, and it doesn’t take my usual ten hours of sleep to replenish them, I can just – do things. I believe I am brilliant, extremely competent at everything I might want to do. I am chipper and genuinely friendly. The world is… uh, there’s some idiom about things seeming to be the color of a rose? Well, I think it’s saying, the world looks more deserving of optimism than usual.

Unfortunately, as I mentioned, these descriptions do not reflect the full spectrum of hypomania. I’ll set aside actual mixed states for another post, and just address here what is for me frequent – a hypomanic episode, or a stage in an episode, where the elevated mood gets intertwined with anxiety and/or irritability. Often my first few days of hypomania feel like what’s described above, but as it continues it morphs into this more distressing version.

All the energy remains, if not increases, but it funnels into rapid thoughts that jump not from creative project to creative project but from worry to worry. I’m on edge. And what really gets me, what leads to the worst consequences, is that my ideas still feel true and brilliant. But they’re now, rationally speaking, worse. I pace in circles, hitting my head. Why? I’m not sure, it just seems like the thing to do. In fact, I can’t think of anything else that would be better. Possibly one of the healthy ideas professionals have tried to train me to think will actually occur to me, like “take a PRN”… But if it does, it sounds absurd – nothing’s wrong, you see. I don’t feel depressed, so I must be fine.

But the “good ideas” are liable to get more and more destructive, and there is little chance to think them over before enacting them – they just seem too Right to second-guess. I might vaguely identify that they are actually terrible ideas, but my brain has labeled them quite clearly as important and sensible and in need of immediate action. My capacity to argue those labels with logic is drastically impaired. And anyway, there is a heavy sensation of inevitability: these are ideas that, once they occur to me, can’t not be done.

It’s this kind of thing that periodically ruins my life. This is why one of the suicide attempts that landed me in the ICU for a few days was at the end of a really, really good day. I wasn’t upset. It’s just, the idea occurred to me, and it seemed like The Thing To Do.

Can I just say how frustrating this is? Not in the moment, I mean, just overall as a thing I live with. Knowing that my brain is really, really good at talking me into terrible ideas at moments I am really, really bad at evaluating them accurately – good at talking me into impulses at moments I am bad at slowing myself down – it makes it hard to even slightly trust myself. Professionals worried about me try to get me to do “verbal safety contracts”, a.k.a. promise I won’t kill myself, and I’m just like… yeah, I’d love to be able to promise that. I’d love to feel like I have that much continuous control over my future actions. I’d love to feel like it’s probably never going to be life-threatening to believe the things I think.

Spoiler: verbal contracts don’t work for me. Personally, taking a PRN antipsychotic, or better yet a few of those over a couple of days, is more likely to work. It has a chance of chemically interrupting the hypomania, or at least squelching it down towards well-at-least-it’s-not-getting-worse. But will it even occur to me? Ideally I’ve identified that I’m hypomanic in the first place, and then mentioned it to someone who can prompt me to take the pill. Obviously emailing my therapist is a good option for making this happen, but also if I mention my mood on Twitter sometimes friends will be like, “um… is there anything you should be doing about that?”, and that’s enough to remind me. You’d think I’d have it down by now without needing external prompts, but, brains are quite the thing.

If this whole thing is resonating with you, here’s a very brief summary of some of the things that help me manage my bipolar disorder (I’ll write a more in depth post on this another time): meds, very strict sleep schedule, regular contact with providers, daily charting of warning signs/symptoms, curated sensory environment, masking autistic traits less/using AAC more, avoiding contact with abusers, plenty of quiet time, ongoing safety precautions (example, picking up prescriptions weekly so I never have so many meds on hand that an overdose would be likely to kill me), routines, being open with my support system.

Brains are quite the thing. I’m trying to learn to be careful about mine. You too? Please comment below.