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.
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.
As someone who is both a supporter of women and a very sensitive human being, self care is essential in maintaining my well-being. Self care is the actions and initiatives people take to treat themselves well. It seems simple enough, but is too often complicated in application. Many times, people think self-care is the same as self-pampering, and sometimes, people (myself included) confuse self-care coping with coping that is actually self-harming (which is a nuanced issue–and debatably, certain actions can be both harming and caring, in that they are both methods of coping.)
Below are some methods of self-care, the big ones you would expect, and the little ones that get me through the day sometimes. If you are someone who self-cares, feel free to add that which gives you strength.
- Pulling my hair of my face. Because I like my face,
- Waking up earlier than I need to. Because then I’ve already done something right, even if it is only 4:30.
- Making myself do something I hate to do, that I have to do, so that I can be proud of myself yet again, even if it is only 4:45.
- “You’re doing good enough, in that you’re doing it.”
- Not procrastinating. Hahahaha, yeah right.
- Netflix, see 5, 6.
- Recognizing what I’ve succeeded at today. #thisblog
- Telling someone who deserves it to go fuck themselves.
- Trusting my gut.
- Only doing what I want to be doing. Selfish self care.
- Believing my perceptions, and allowing myself to feel my own feelings.
- Forgiving my own ongoing anxiety. Remembering that everything is one breath at a time.
- Remembering that my passions are great, but somehow, simultaneously, nothing fucking matters. Think about it. It’s the unbearable, beautiful lightness of being. You can’t change a damn thing. So relieving and suffocating all at once.
- Thinking of those who have treated me with respect, and allowing space to feel grateful for them.
I wasn’t specific to disability, cuz it didn’t show up for me today. No no, it’s still here, just, not in this post.Having said that, I am immensely jealous of people that can bath whenever they want. You self-care gods, you.
T minus 9 days til the the world ends–er uh, disabled people have a sex party. Never in my twenty some-odd years have I seen so much negativity around sex as I have when it pertains to PwD–and this party (and the coverage around it) is proof of that.
Fact 1: Disabled People Are Either Hypersexualized or Infantalized.
That’s it–as a PwD, you have no other option.People are either fascinated by the fact that you’re having sex, and hypersexualize you into oblivion as a result, or they can’t deal with your sexuality and the humanity that might demand recognition along with it. The coverage of the 2012 paralympics is a sad example of this oversexualization, discussing ideas such as small-stature as a reason for extreme horniness– as if they are concrete, scientific and somehow acceptable.
The trouble here is that hypersexualization is dehumanizing. It makes PwD into a spectacle. Do I have to spell out why? When we fuck at the paralympics, you best believe its not because we’re hypersexual, or that we’ve lost our minds, or because of the testosterone “whizzing around in [our] bodies,” (what the actual fuck?!)…It’s because we’re human and fucking is more fun than sports.Fuck sports.
On the flip side, you’ve got the infantalization problem.I’ve blogged about this to infinity and back, so I’ll simply say this: I’m 27, and some people are still genuinely shocked to find out I’ve had sex. It breaks too many people’s brains to hear that I’m not only no longer virginly, but that I also enjoy sex (as many humans do…). People just can’t compute that a child like me would indulge in such atrocities.
So much lit has been writ on the infantalization epidemic, Google it if you want more than my personal struggles.
The fact that these two extremes are the only picks for PwD lend to the difficulty we have with seeing disabled people as people. The tendencies to objectify and/or ignore our sexuality has left us (PwD) excluded from proper sex parties, dance parties, high-school proms. We not only need this. Our humanity deserves this.
Fact 2: Exclusion is Real and Really Shitty.
I didn’t go to my high-school prom because it was inaccessible. I only went to one house party in all my 4 years. I am a prime person to pre-drink with, mostly because main events are almost never at accessible venues.
These circumstances would be a lot easier to swallow if they were infrequent. But inaccessibility is an everyday occurrence. This will be the first party to try and counter the commonplace inaccess to parties, party places, and sex and dating spaces.
Fact 3: We Deserve The Chance to Get Rejected
Someone asked me recently if I thought this party might be damaging to disabled people. They mentioned that it might eexacerbate current oppression and rejections, as the nature of social interactions (and sex) is competitive.My response to this was: “The worst thing we can do is protect disabled people from these sorts of things. Disabled people are people, and part of personhood is being hurt.” We have a right to the shitty side of human interaction, because we have a right to social interaction, period. Enter, sex party.
Fact 4: Comparatively, Our Sex Lives Suck
“Sexpert” and Clinical Psychologist Dr. Danielle Sheypuk tells us that PwD have much less sex than our ablie counterparts, even though able bodies report a low sexual satisfaction rate. She then states that even though she [a person with a disability] “is a catch, her Match.com guy is much more likely to date,” and find sexual partners.
Statistically, all signs point to sad when it comes to the sexual frequencies of PwD. We don’t get enough of it, not nearly enough, because most of the population is hesitant to even meet us for coffee. If you don’t believe me, watch Danielle’s talk in the link above.
It’s our time to change the stats. Our time to change the dehumanization. Our time to rock the boat a little. And ladies and folk, we need a sex party to help us do that.