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!

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We deserve access to AAC!

Let’s talk about the impact of pushing speech only on children with speech problems. I was in speech therapy until I was eleven. I don’t remember everything about it, but I think I was mostly there because I said a subset of consonants differently than typical kids. I am not actually clear on whether people around me were really having a hard time understanding me, but looking back my impression is that my speech was not unintelligible, it was just different. So I have to wonder, were the years spent training me to talk “better” worth it?

Because, here’s the thing. The message I came away with, all those years later, was that the way I naturally did things was bad and wrong. Given, this message was coming across in more areas of my autistic life than just speech, but speech was certainly one reason I felt like who I was wasn’t okay. That has had a lasting impact on my self esteem and mental health. I was being given rewards for pronouncing things right, and drills and homework when I did it wrong. Meanwhile, I am not sure it ever occurred to anybody to actually ask me if I wanted to learn to pronounce things differently, or whether I was comfortable with the way I sounded. I know I did not enjoy my speech homework: reading aloud at night. Mind you, reading and books and words and letters were my special interest, but I did not see the point of reading out loud if I could enjoy my book twice as fast by reading silently. I do not remember expressing any of this, I needed love and approval too much to risk voicing my internal dissent as often as I felt it.

It also did not seem to occur to anybody that speech might be even more difficult for me than was represented in my actual output, and that it was just getting more and more exhausting the more I tried to say things the way they wanted me to. It’s only now, as an adult, that having access to AAC is showing me how different my early life could have been if that struggle had been better recognized. With AAC it’s like a giant weight I hadn’t fully realized was there has been lifted. For example, in sign language I find myself outgoing and energized by social interaction, the complete opposite of my other experiences socializing. Using dedicated high tech AAC on a day to day basis tangibly improves my life as I can express myself more fully with less difficulty and I have more energy to spend on other tasks. So why didn’t anyone try me out on these options when I was in speech therapy?

Not being diagnosed autistic at the time perhaps has something to do with this, but I believe it shouldn’t. I think everyone in speech therapy for any reason should be considered candidates for AAC – not in the sense that the therapist thinks about it for a few seconds and then checks a box saying it’s been considered but isn’t necessary, but in the sense that it is presented to the communicator early on as an option they’re welcome to explore if they think it would be helpful. Please note that I said “presented to the communicator”, not “presented to the family”. Caregivers don’t have the right to make decisions on behalf of disabled people about how we communicate; every human being has a right to determine that for themselves. It’s caregivers’ and professionals’ job to provide as many options as possible. This statement is not dependent upon perceivable verbal ability. People with any kind of struggle with speech, language, or communication – no matter how adequate or promising you think their speech seems to be – might possibly find AAC easier, more effective, or otherwise preferable for expressing themselves fully and without undue hardship.

Presenting atypical communicators with these options and determining whether they want to work on speech, pursue AAC, or both is going to look different for different people. For an apparently verbal autistic kid like me with pronunciation problems but demonstrated ability to understand and respond to questions about preferences, professionals could initiate a verbal conversation about the topic accompanied by demonstrations of some AAC methods and directly ask what the person wants to focus on. For nonverbal kids who haven’t yet been given supports necessary to demonstrate their ability to understand questions and communicate their preferences, this can be approached differently. Pair speech with sign language and/or picture boards early and consistently, and wait to see which method of communication the child attempts to learn. If the AAC methods have been presented as equally favorable as speech – if no one is coercing the child into focusing on one of the methods over the other – the choice of communication method(s) the child begins to use is in and of itself an expression of their needs and preferences. In either of these scenarios, if a communicator chooses to use AAC, professionals’ and caregivers’ job is to make sure we get quality tools for the method(s) we show interest in (symbol books, letterboards, devices, etc), to model consistently and intensively so we can learn to use those tools comprehensively, and to actively validate our communication methods as equally valuable as speech.

Making sure we have the chance to try AAC if we want can have such a positive impact on autistic people. For one thing, it’s a chance to give us agency over our lives, something too often stolen from disabled people. It sends the message that there is no one right way to communicate, that any method or pronunciation or word order is effective communication if it’s getting the intended meaning across. This could do a lot for the self esteem of those of us who communicate atypically. And finally, for those of us who do end up finding AAC more comfortable than speech, it’s opening a door to a priceless tool that can improve our quality of life drastically. Please never assume, based on what you see from the outside, that we don’t need what’s behind that door. Give us the chance to decide that for ourselves.

 

Credit to my dear friend Saoirse for being a second set of eyes on this post.

“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.

Day in the life of a part-time AAC user

It was hard to pick a single day to attempt this on, because my days all tend to be very different from one another rather than having any one “typical”, but here is my December 6, 2018…

7:30am: It’s time to feed my cat. I know this routine. “Your turn,” I tell her. It is an echo, something I can say with my mouth voice most days. Echoes are usually easier than spontaneous speech (here’s a video about echolalia if you’re unfamiliar), and talking to my emotional support animal is usually easier than speaking to other people.

7:45am: Taking the trash bag out, I see a neighbor I recognize in the lobby, but feel no pressure to speak. My neighbors know that I don’t. Well, most of them are under the impression that I never speak at all, an idea I deliberately allowed to build up. It is just so much easier than needing to justify using AAC part-time. Unfortunately, knowing I use AAC means most of them ignore me most of the time. It is a little sad that due to my communication method people here do not get to know me, but still I feel much more comfortable here than at the last apartment I lived at, where every elevator ride necessitated spoken conversation.

8:00am: The cat, now, is very awkwardly trying to arrange herself on my lap. Getting impatient, I say, “what doing?”. She doesn’t know that sentence was supposed to be more fleshed out. That’s why I don’t mind talking to her so much.

9:30am: On the train ride I start this blog post, using my symbols app to compose sentences and then copy and pasting into Google Docs. Somebody hovers just behind my seat for a weirdly long pause as I work, and I have to wonder whether they are staring at me.

10:15am: I have a folder just for phrases I need for my weekly pharmacy trip – because the exchange is always so predictable, it is easy to make a complete script in advance. The staff there are familiar enough with me that they do not blink when I show up using whichever communication method I’m favoring that day. However, I find myself wishing that somebody there knew sign language. It would be a great situation to be able to just say what I need quickly, without having to balance my device against my stomach while juggling a bag of prescriptions.

10:30am: I stop by my clinic’s referral office to see if they can call the local specialist I’m trying to go see. I adore text relay, but it’s admittedly much quicker to have someone else make this kind of phone call than it is to attempt it myself. The person I find in the office says hello in response to my greeting but then goes back to working on their computer while I type my next message. At least they respond when I do finish rather than ignoring me completely.

10:45am: The receptionist at my therapist’s office seems to think I am ignoring them when they call me to the desk and I start typing. They’re relatively new here, but they have met me before – that time, they didn’t acknowledge my AAC voice at all. (To be fair, I am really bad at judging whether my volume is too loud or too soft, and people seem hesitant to ask me to change it, so it’s possible they really just didn’t hear me.) This time, though the interaction is successful enough to check me in, they misgender me in the process. The app I use only has one voice option that has a slightly between-typical-binary-voices pitch, but sadly that’s not enough to suggest to the average cis person I might be trans.

11:00am: My therapist is very familiar with my tendency to switch communication methods back and forth within the same conversation, so the whole fifty minutes my speech is interspersed with typing from my QWERTY app. I notice, amused, that some stims are easier with one method versus the other – use my communication device, and it’s easier to suck on my chew necklace, use speech, and it’s easier to flap. I do sign “sorry” at one point automatically before remembering he wouldn’t understand it.

12:00pm: I stop back by the referrals office to see if the staff person I was looking for has returned yet, and indeed they’re there to take my questions via my communication device. Since first meeting them they haven’t commented or questioned that sometimes I speak and sometimes I don’t, but this time they do say, “wow, you type so fast.” I’m tempted to reply “you speak so fast”, but, whatever.

1:30pm: A walk, train ride, and trip through IKEA later, I am sensorily overwhelmed and not very languagey. Hands too full to type, I ask the marketplace cashier, “find marzipan?” They ask me to repeat myself. Sadly, they’re out, but I get through the rest of the transaction wordless.

…my AAC-related life basically ended there for the day, because I proceeded to enter sensory overwhelm plus then got an upsetting email. I barely got myself home in time to crash. I didn’t have any more face to face interactions that day, but friends were incredibly helpful via texting and twitter in getting me through the crash. To be honest, that kind of communication is essentially AAC as well. It’s not called that because abled people use it, but it’s totally just a method of communicating that doesn’t use speech, so I think it counts.

Well, nothing like trying to write a “day in the life” post related to disability and having the day end up derailed halfway through by disability (or I suppose more accurately, by ableism/inaccessibility). But hopefully this post gave you, um, six hours’ worth of insight into my life as a part-time AAC user. As you can see, most days are a weird mix of increased access due to this assistive tool and simultaneously decreased access due to ableism. One of the most important aspects my communicative life is flexibility: I really value situations where I can switch between communication methods whenever needed. So one of the morals of this story is how crucial it is for me to have people and places that honor my communication needs and choices. That means training for professionals, more kindness from strangers/acquaintances, and relationships where I feel safe to unmask. Where I feel free to speak, if I’d like, the way I would to my cat. And where AAC is understood as a not a sign of failure or a lack of something to say but as a positive tool that helps me say all the somethings I want.

Ableism and invalidation

I am autistic. How is it that after finally accepting that, I still sometimes have doubts? Well, external invalidation, mostly. Unfortunately I have very recent experience with this, so this might be a hard post to write.

First, some background. I was not diagnosed as a kid, and while I know this has some privileges – for example I stayed safe from ABA – it also screwed me up in terms of self image. I knew I was different than the people around me, yet had no explanation for that (for my queerness or my neurotype). I knew people around me thought I should change, and I internalized that as: who I am is bad. So not only did I not know there was a perfectly good reason for the things I felt and did, I came to believe I was not a worthwhile person.

Skip to adulthood. A therapist who had experience working with autistic kids was the first one to tell me I was on the spectrum, in my early twenties. You might think at this point I would begin to understand myself better and feel more okay about being different, but… enter imposter syndrome. For one thing, nobody directed me to information created by actual autistic people, so when I looked over lists of traits I just saw a ream of behaviors. I wasn’t sure that I could see myself in that. How was I supposed to know whether other people thought my nonverbal communication was atypical (or etc)? One small manifestation of anti-autistic ableism is the fact that the diagnostic criteria and readily available lay information about autism is written from the viewpoint of parents and professionals. It frames autism as a set of outwardly observable behaviors – because our behaviors apparently inconvenience them so much. Their experiences are centered and ours are ignored. This prevents so many people from figuring out they’re autistic, or in my case, from believing that I was even after having been diagnosed.

This went on for a decade. I knew what that therapist – who had known me for years and who I trusted deeply – had said, but I kept thinking maybe it was a mistake or an exaggeration. You could say it took another counselor noting that I met the diagnostic criteria during an intake, and then my current psychiatrist and therapist confirming and making sure it was in my medical records before I really accepted it, but that’s only slightly what helped. It took, mostly, just hanging out around other autistics. For months if not years I introduced myself on AutChat as “questioningly autistic” and then “diagnosed-but-forever-imposter-syndromely autistic”. But the more autistic people I talked with, the more I understood how many ways there are of being autistic and I began to see myself in other people’s experiences. I got more information about what it feels like to be autistic, not just how it looks from the outside. And finally, wonderfully, a couple of years ago I got to the point of: “HI YES AUTISTIC HI!”

So the problem? The reason I still, every so often, doubt myself? Ableism, medical gaslighting, and other forms of invalidation.

This was exemplified last week when I found out the doctor the county hired to review my records and talk to my friend and I (for all of two hours) reported back that I don’t qualify for I/DD support services because I’m not autistic.

!!!, to say the least. This seriously messed with, and is still messing with, my self image. Hell, my self esteem. I’d finally become able to attribute all those things about me that people wanted to change to my neurodivergence (and my gender and general queerness and etc) and thus accepted them as valid differences that were not all inherently negative. That is, these things I used to think were “wrong” with me don’t actually mean I’m a bad person, they just mean I’m autistic! I’d integrated it in to a positive self identity and built connections in the community that have profoundly improved my life. So why. The. Fuck. Was this doctor allowed to just negate all that and proclaim allism?

I freaked out when I got this news, and in some ways am continuing to freak out. I’ve had lovely Twitter friends reassuring me on all fronts, and I just keep trying to remind myself: 1) the system is designed to find any excuse possible to weed out applicants so they don’t have to pay for benefits, 2) multiple clinicians who have collectively known me for close to a decade agree that I’m autistic, and 3) philosophically I already value self-diagnosis and community recognition more than professional diagnosis anyway. (Clearly; as my history shows I didn’t accept my professional diagnosis until I personally came to agree with it.) So why let this random doctor mess with my head?

I don’t have a neat shiny way to wrap up this post because I’m not through processing yet. It is helping to have peers name what happened to me properly as gaslighting and to have their support. Mentally running through all the “proof” I’m autistic is perhaps helping a little – or perhaps just turning into circular obsessive rumination, I’m not sure yet. Group therapy today happened to be helpful (frankly this is not necessarily a common occurrence) – the curriculum was about self esteem, and the therapist pointed out, “just because someone says something about you doesn’t mean it’s true”. And I suppose writing this has been helpful, because it’s good to place what happened to me personally into the larger context of an ableist world that habitually invalidates autistic people at every turn.

I hope whoever’s reading this can’t relate, but I know how common the experience indeed is. So I will say, if you have had situations like this, please feel free to share in the comments below and I’ll listen. And everyone reading this, if you’re ever in a position to actually validate an autistic person and feel like you can probably do so in a helpful manner, please do it! We are autistic, we are worthwhile, our experiences do matter, we do deserve supports, and we’re surrounded by a world that makes us doubt those things – so please believe us and affirm us.

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.

My needs are not “special”, they are human: assistive aids in my life

I had a school project a couple of years ago where we were supposed to make a collage representing disability. I thought about the ways disability is tangible and visible in my life, and realized the most obvious images available to me were the assistive aids I have come to use as supports. So I started brainstorming a list of examples. It was not long before I came to the conclusion that there is not really anything at all in my life that I do without supports of some kind. Here is some of the most crucial of the list I developed – maybe you’ll see yourself echoed here, or find a new idea of something that might help you:

Applesauce: this is the only way I have a chance of swallowing my… what, eight daily prescriptions? Even this skill took very gradual practice with minuscule pill pieces long into my twenties. (As far as I can tell it’s texture sensitivity and oral motor skills problems causing the impairment.)

Earplugs/ear defenders: earplugs go in multiple times daily, most commonly for transit. Layering with ear defenders is the only way I have a chance of attending concerts (which, even then they have to be special interest related).

Baseball cap or sunglasses: again, these go on every time I leave the house. I have a really narrow window of tolerance for light level, so I’m commonly turning on the lights in my house yet can’t cope with direct sun.

Stim toys and jewelry: you know the catalogue. Every kind of fidget, scented plushies, chew necklaces and glitter-water bracelets and spinner ring, confetti wand and watercolor drip keychains, soft furry stuffed things of all sorts, weighted beanie creatures… yes, I have a bit of a collection. Just a smidge. I highly recommend Stimtastic.

Frozen meals: to abled people these may represent convenience, but for me they’re the only way to regularly eat main dishes that aren’t granola bars. Cooking is not in my repertoire. I’m trying to get some in home supports to help, but the county program is taking a million years to decide whether I’m too high-functioning. *rolls eyes*

Weighted blanket: yes, even when asleep I’m using assistive aids. It’s also useful for meltdown recoveries. Placing it on my lap is some kind of alarm bell for the house elf (my emotional support creature, another assistive aid in my life – Muggles think she’s a cat) instructing her to come sit atop and tend to my brain.

Text relay: I was stunned to find, after finally trying this, that I can now just… call people! I didn’t realize how much I avoided it until I got the accommodation that makes it possible. Question for doctor? Can now call. Appointment for food stamps? Can now call. Poking my senators for the third time this week? CAN NOW CALL. It’s honestly kind of life-changing.

Reading aids: I set my Kindle app to display books with a lot of extra spacing and the OpenDyslexic font – as far as I know I’m not dyslexic, but these adjustments make a huge difference in how likely I am to read on a regular basis. (I think it’s a visual-input-overload sensory issue.)

iPad/speaker: if you’ve read this blog at all you know I use AAC part-time. Now that I have an actual device I can’t imagine living without it.

Captions: like my iPad, I can no longer imagine life without these. As I rewatch old favorites I keep finding out there was dialogue I had no idea wasn’t just background noise.

Bus pass: I can’t drive. Access to public transit at a rate that is ~affordable for my poverty level income is the only way I’m able to get to the doctor, school, coffeeshop, etc. I also rely on the Trip Planner and Google Street View to orient myself in advance to unfamiliar trips. (Okay, truly I avoid unfamiliar trips, but when it’s absolutely necessary I need these tools to pull it off without a shutdown.)

To do list app: helps with some executive dysfunction issues. I need it to be on my phone so I can add to it anytime anywhere. I will stop conversations to do this, otherwise I’ll forget what it is I meant to add.

What is interesting to me about this list is how unremarkable many items are. Some don’t seem to have to do with disability, although that’s what I use them for, because they’re used by abled people too. It says a lot about the value society puts on disabled people that supports we need are labeled “special” or “extra”, while the tools abled people use are considered just mundane details, or perhaps cool lifehacks. We are shamed and invalidated for needing/using certain accommodations, while the things that make the world accessible to abled people are treated as value-neutral or positive. This is true even when the things we need closely resemble the things abled people do! Millions of people use Google Calendar to block out their day in color-coded rectangles, but if I use a different app to add images to my own agenda, it’s called a “visual schedule”, a disability thing. If every patient on the psych ward except me needs water to swallow their pills, the nurses happily bring water along for every dose. But since I need applesauce instead, the nurses’ realization that they’ve forgotten to bring it for the dozenth time is accompanied by a sigh of annoyance.

I want to use my assistive aids without getting weird looks and invalidating skepticism. I want them to be affordable, or even – *gasp* – free for people who need them. (Note that we should be able to establish our need without having to jump through… I think I’m up to seven months’ worth of hoops with the county program.) In situations they don’t interfere with anyone else’s access needs, I want them to be the default. I want them to be normalized, or at the least accepted. Hell, some days I’d settle for tolerated.

My needs are not “special”. They are human. Abled needs and their supports are not a natural default, they’re just privileged by virtue of the company they keep. Mine deserve just as much resources and respect.