Email me to find my new spot, as this one will no longer be in use.
(This was originally posted as a Facebook rant)
It’s 2018 and I’m trying to get my shit on lockdown and only read things that aren’t a waste of time. The trouble is that you gotta spend time to know that you’ve wasted it–so I started the year reading Brene Brown’s new book, Braving The Wilderness, because she’s done good work on vulnerability in the past, and honestly, the wilderness sounds cool in contrast to my stuffy apt which constantly smells of cat piss.
Brown gets praised for offering self-help supported by her own research, and taking self-help into a place it doesn’t usually explore: vulnerability. She states multiple times, in every book of hers,(see IThe Gifts of Imperfection and Daring Greatly) that she is a professional researcher who has dedicated her life to said understanding of vulnerability. The funny/ironic part of this is is that she isn’t really vulnerable…not in the way that I define it. She’s privileged. She’s able-bodied, white, with a supportive husband and children. She has a team of people to bounce her ideas off of, who keep her in check and force her to grow as a person. These circumstances allow her vulnerability that is largely self-chosen and boundaried, which is… the opposite of the vulnerability that I know, as a disabled person.–the kind of vulnerability that is not chosen or researched but lived.
Some of the semi-obvious ideas that Brene discusses as if there isn’t an entire population of ppl who have lived and learned from lifetimes of vulnerability are:
- Being vulnerable is rough but can be rewarding if you have good friends
- Honest living is courageous and lying is easier. (actually Brene, for some of us, honest living isn’t a choice, but a matter of circumstance, because we are physically limited and thus, tangibly vulnerable)
- Shared vulnerability is powerful (yes. There’s a reason all my friends are freaks like me. This seems so fucking obvious to me, but sure)
- Being true to yourself is worth it. (She could’ve asked any of us if we’re true to ourselves and most of us would say yes, but not by choice, rather because society doesn’t accept us. Being true to self is all a lot of us have, duh)
After reading Braving, I’ve concluded that Brene could’ve saved herself a shitload of time and probably some research dollars, by asking disabled people how we’ve come this far. But, she didn’t. and the quality of her book suffers. She relies on a lot of the research she conducted but rarely states who her samples were and uses frequent personal anecdotes to make her arguments., which can be hard to extract from.
It’s disappointing because vulnerability research, in the form of easily digestible books such as this one, are desperately needed, but we need to start by asking people who experience lifelong vulnerabilities. Start at the margins, not at the heart of privilege.
On that negative note, Brown does make an important point about the unintuitive positive impacts of collective pain. She states that it’s just as important as collective joy, and I found that interesting enough to order Option B, which is a book on grief. If you wanna waste time sifting through it with me, it’s on Amazon for 18 bucks used. Don’t worry, this is not a paid endorsement.
If you know of something worth reading, let me know. Save me from my own shitty taste.
God, I’ve shied away from this topic for so long because I want one ounce of my life to be free of sad, inescapable b.s. dictated by others. But alas, here we are: it’s Monday morning and people are putrid.
I’ve been dating this guy for about 6 months now, A comprehensive list of the reasons we are/were dating is as follows:
- he likes having a gf
- we both like sci-fi movies and talking about the ever-approaching apocalypse.
- I like hugs
- we’re both staunch losers, who eat and sleep way too much
- we both hate people
- he tolerates me laughing at my own jokes
- i tolerate his inability to laugh at said jokes
There are a couple other reasons on my end actually, including some instances where he’s said the right stuff at the right time about my disability-like, that he wishes he were better at helping me. It might not sound like much, but all my other partners have leaned more towards the “I wish you were less disabled but oh well” train of thought. Say it with me: low bar.
Slowly though, the good responses to disability became little more than stock answers and ableism made its grand, relationship-ruining appearance. He is a person with naturally low empathy, who tries to be good on a cognitive level, not an emotionally driven one. When my disability would come up over text, he’d say something defensive like, “Well, you don’t like your disability either. It’s just something that’s happened to you.” A fact which I cannot readily deny or even confront.
All the while, he continued being somewhat helpful, and saying other things like, “You don’t have to be afraid to be honest with me.” Which, really, felt like shit most of the time, because his subtle ableism was getting more and more overt, and yet, I could not risk confronting it.
Until of course, it happened so blatantly, I had to put an end to it. Recently, during some foreplay stuff, he pulled a move that had nothing to do with my pleasure, and I told him to stop. He did, and we laid there for a bit, while I explained (with his prompting) that I didn’t enjoy his move because I was not an active participant in it; it barely mattered if I was even there for it or not. He took a minute with my answer, as if carefully thinking out his reply, when he said, “You’re never really an active participant.”
I felt his ableist put-down stab me straight in my overly-sensitive heart and was stunned into silence.
Instead of using this space to, I dunno, take back his bullshit or leave me the fuck alone he continued, “If you were able-bodied, you would’ve allowed it” (that sentence has been changed to keep the specific sexual move private, but the sentiment remains). Jolted by the fact that he had the nerve to keep speaking to me–and insult me further, at that–, I said, “Stop talking.”
Here’s the thing about ableism: it’s slippery–difficult to confront because it’s often deeply internalized, impossible to talk-through because it automatically rigs things against you, assigning blame to things that are out of your control. It’s the cheap shot of all cheap shots, but still has the power to make you feel like shit.
Abelism or no, I no longer empathize with people that refuse to empathize with me.
Excuse my choice of wording, it’s intense and maybe some of you rolled your pretty eyes, so let me explain. It’s 2017, and we’re finally at the point where we can finally talk about ableism semi-openly, and kinda-sorta-sometimes be understood. In the wake of this progression, many PwD have taken to the internet to explain specific kinds of ableism as they show up in dating and intimacy. We scramble through our experiences and horror stories, trying to describe with accuracy all the very specific bulshit that’s happened to us, wading through it in written form, trying to make sense of being treated like garbage more often than not. One such blogger, Spice and Crutches, does this with the bluntness and clarity that seems to only grace most people in the minutes right before they fall asleep at night.
Her most recent post, “My Disability Doesn’t Make Me Difficult to Love, it Makes it Harder for Me to Accept Ableist BS,” talks about the protective armor life with a disability has given her:
“Throughout my life, I have cultivated a well learned, low threshold for bull–it’s what has gotten me this far. For better or for worse, I can assess a person’s character in seconds with a precise level of accuracy. I don’t get tripped up, so I don’t fall”
The way she writes about her bullshit detector makes her sound pretty badass, but I wanted her to go further. I wanted her to talk about to talk about how lonely, “Not-Today-Ableism, Not-Today,”” life actually is. I wanted her to explore what happens when we accept ableism, just a tad, in the name of achieving intimacy. Because, from where i sit, accepting ableist BS in the name of love and friendship is heaps more likely than living life alone.
Since ableism is part of disabled life, it’s easy (and common) to become complacent towards it, especially in dating situations. One morning last summer I was out for breakfast with this guy, Tim Kitz (of whom I’ve written previously). At the time, our relationship was fresh and I still felt a lot of hope, mixed with the pesky desire to confirm that he was genuine. We had just finished coffee and making fun of others, and he was pushing my wheelchair in the direction of his truck, when he sighed and said, “Kristen, is it bad that I kind of like going out with you because it makes me feel good? I just, I know people are looking at me like I’m some sort of saint right now.”
I paused. Why did he have to wreck an otherwise great date? Omg he thinks I’m a prop. I thought of all the ways i could reply, and about the fact that it was still another block to his vehicle and said, flatly, “If that’s the only reason we”re hanging out, we need to re-evaluate.”
And just like that, my BS-filter sputtered a little, and the first bit of ableism was apparent. I look at the way I replied now, over a year later, and I don’t feel angry at myself. I don’t judge myself. I know that often, ableism is the price for intimacy, and I’m used to that reality. In an ideal world, I would’ve been able to say “No, that’s not okay you fucking dick,” but then we would’ve had to fight all the way to his truck, my wheelchair under his full control. So the ideal response wasn’t even possible, no matter how desired.
We accept ableism because it is everywhere–and to not accept it is to assume even more vulnerability. Often, saying no to its manifestations is simply not an option.
So. It’s 3:45 in the morning. And I’m awake because of a “disability rough patch,” which is a term that I made up, to describe those weird moments–days, weeks, or months–when your disability seems to be getting worse, only to have things return to normal at some arbitrary point in time.
When you live with a boring old “non progressive, largely not yet understood” disability, these rough patches can make you feel like you’re losing it. For weeks your sleep can be irregular, your bladder can stop bladdering, everything can suddenly feel like your moving through all the spasms, just to do one little, stupid, fucking thing–and then poof, your mojo is back and you are back to regular programming. And because you barely know what’s happening, it can be hard to explain to others. So, as a person who’s had 10+ years in disability rough patches, here’s what I’ve learned:
- Disability rough patches are real, you didn’t make it up. Just because the heightened symptoms are temporary (with non progressive disabilities), doesn’t mean you’ve imagined them. As disabled people, we often have to explain ourselves to everyone, because unless you’ve got it, you just don’t really get it, so , on a base-level, it’s crucial that we validate our own, and each others’ disability rough patches.
- Disability rough patches usually have an end. Don’t worry, soon this will all stop and you can totally avoid the doctors’ in good conscience.
- You really do deserve extra self care when this happens. Something’s up with my emotional regulation thanks to brain damage, and that amplifies in times like these. Yesterday, I cried while reading a book I barely like, because one of the characters I barely know had a friend die. I straight up bawled my eyes out. It was 7:45 in the morning and the book is fiction. Please rough patch, end soon. (If that doesn’t scream step back and take care of yourself,, I don’t know what does).
- New problems show-up sometimes. And then they vanish. This time around, I’ve been waking from my sleep gasping for air. In the past, I’ve slept way more than normal, but then gone back to my regular sleep schedule weeks later. I think it’s normal that new and exciting problems show up and then leave again, just too keep you on your toes.
- I am not a doctor. There’s a chance that the “disability rough patch” is just my way of coping with the unknowns of my disability to avoid doctors. So, if you’re going through stuff that’s totally unrelated to your disability, maybe ignore everything I just wrote and go to the doctor.
Ways I take-care of myself during a rough patch:
- Disconnect from social media and email as much as possible, and give myself brain-space to actually think about what I need instead of people’s dumb, ableist, never-ending schedules and demands.
- Netflix. Hahahah, whatever, I do this when I’m great, too.
- Naps. Because, when you have no idea what the fuck is going on, why not sleep on it
- Forgive yourself. I know this one’s all cheese,but often because we have to justify everything re: disability to others, we have to justify it to ourselves too. Forgive yourself, you don’t owe an explanation and you didn’t do anything to bring this on.
- Hang out with other PwD. Or stay home with the cat. Your call.
- Go to the doctor? Make sure you’re in a solid enough place first through, this one’s usually terrible.
This morning I was having a typical whatever morning, barely awake but making tea, when my wheelchair decided to fuck right off and die. So there I am, fridge open, scoping out butter to put on my bagel, when my chair stops acknowledging me. It’s totally frozen, the screen or joystick isn’t reacting to anything–including being shut off. I look in the fridge for answers. I find brie cheese and salami and denial-eat for like 15 minutes, waiting for my chair to regain awareness. Somewhere in there, my bagel pops out of the toaster, just out of reach. The kettle goes off. Everything is happening around me and I’m eating salami. Finally, my denial starts drifting away from me–I’ve reset my wheelchair clock and checked the fault log and ate a whole fucking lot of cheese, and the situation is still the same, I cannot move.
“You can’t just break. No. This isn’t a thing.”
“Who makes chairs that just stop working?”
“Why aren’t I happier to be stuck in the fridge?”
After I say these things out loud to no one, I open my footrests and start psyching myself to make friends with the floor. I picture the ways this could go down:
- Find footing and try to bridge the distance between my wheelchair and the counter. This way, I could stand for a bit at the counter and eat the bagel and maybe even find enough balance to spread loads of butter on it to make myself feel better. Then i could lean on the counter and walk until the counter ends. And then fall over.
- Buttslide like a six year-year-old (5? 4?) at recess. The distance from my chair to the floor would cause brusing, but it would be quick.
- Turn my body all the way around, like that stupid, moronic way they taught us in kid-physio, while all the other (non disabled)kids were learning cool things, like gymnastics and soccer. I recall it involved a lot of me pressing my face into my backrest saying, “This is sooo hard,” and “I can already do this, why are you making me do it again?” as if those two statements don’t totally contradict each other.
I know option three is the way to go. All that time away from peers, resulting in social isolation because of physio had been building up to this moment.I take my footrests right off, throw them in the fridge to make space for my wiggling worm body. I turn my hips, slowly, heaven forbid I fucking scare myself by moving too suddenly. And then I start to just fall to the floor. Except my body doesn’t just allow for shit like that to happen, so my legs start spasming, they’re fighting gravity, they’re twisting around each other, trying to keep my upright. They know that beyond a certain point, there is no getting back up. I talk to them. I really hope other people talk to their body sometimes. “Come on feet, if you can’t help me, you gotta let me go.” They spasm anyway, but I drop my hips to the floor and allow my legs to flop to the side. I feel good about this for half a second, until metal from my chair digs into my side and puts everything in spasms. My hand is wrapped tightly around the side of my chair, holding my up. I consciously try to let go, and fall quickly onto my back. It’s weirdly comforting to realize step one is over. I made it onto the floor.
I start grabbing at the drawer handles around my kitchen and pull myself–on my back, like a slippery bug– to the living room. It’s easy, and I start to think I’m amazing. Just scootin’ along. In the kitchen. On a Thursday morning.
And then I get to my bastard rug and my vibe is wrecked. I turn over and start dragging myself. For some reason my shoulders are burning and I’ve only been pulling myself along for like, once. I stop and take a nap. I’m not sure how long I’m there, but it is long enough to notice that my carpet is full of winter salt and purple hair. Basically, I’m a dirtbag.
I’m thinking about how it’s great that my hair stays purple even after it falls out(purple is immortal). And then I remember that I’m on the floor. Still. I crawl like a child who can’t actually crawl but can’t give up either, for like a zillion more years. Finally I get to my desk, where my landline from the nineties awaits. I knock it of the dest and naturally, it hits me in the fucking face. I’m a tad angry at the phone for not empathizing with all I’ve been through. And then I call for help.