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.
Taking a break from the usual dark, personal content to tell you about an initiative that I’m working my butt off to make a reality: A crisis line, run by people with disabilities, for people with disabilities(PwD). It’s a wonder that a crisis line specifically for PwD doesn’t already exist. After all, we’ve got crisis lines for the LBGT+ community, and for people that are experiencing abuse, we’ve got teen helplines—we’ve even got one for helping kids with their homework. We recognize that certain circumstances warrant help from people who” get it” (ugh, homework), and yet we don’t have any phone support for those struggling with disability-related stuff.
It’s a puzzle as to why that is, when the suicide rate of PwD is 2.5 times higher than the average population in North America. (Depending on where you look— despite high risk, PwD are often overlooked in suicide prevention and analysis, which is another classic example of erasure. I digress.) Other deeply alarming facts, like how over 80% of women with disabilities will experience sexual assault in their lifetime, scream for the development of a disability-specific crisis line.
Aside from gut-wretching stats, there’s the simple, undeniable truth that living with a disability can be fucking difficult sometimes,. It’s hard when doctors don’t really know how to treat you, or assume your disability is the root of all your health problems, instead of examining you properly. It’s wearing to have to educate people often, on what your disability is and how it affects you. It’s tiring to fight against subtle or overt discrimination, against hate speech, against ignorance that has kept you isolated so many times in the past. It’s heartbreaking to grieve loss of ability, and to not have the ongoing support needed as you enter life as a newly-disabled person. And these are just a few of the struggles we so frequently face, as PwD.
If we can’t immediately remedy the ableism at the root of many of these troubles, the least we can do is provide emotional support for PwD, and that’s why I’m trying to start a crisis line for PwD. To give us a space to talk, to vent, with someone who knows what it’s like to live with disability. To have a number to dial when you’re looking for disability-related resources. To bridge the gap, create connection, break isolation.
So. If you’re reading this, and you’d like to help make a crisis line for PwD come to life, there are a few ways you could help:
- if you’re a PwD who wants to tell me their thoughts on a crisis line, and how it can bet serve PwD
- if you know anything about writing grants
- If you know anything about crowd sourcing/fundraising
- If you can tell me why having a crisis line for PwD is a shit idea
- If you know of any excellent resources/social agencies, that serve PwD well if you know of an organization that might help fund a crisis line for PwD.
Finally, the rate of unemployment for PwD inON is nothing short of pitiful, with PwD at 51% unemployed, while those without disability have an unemployment rate of only 21%. Many organizations struggle to be accessible to those that may work best from home, or with accommodations in an office setting. The Partnership Council on Employment Opprtunities for People with Disabilities’ report states that businesses are reluctant to hire PwD because of concerns regarding “absenteeism, lower productivity and expensive accommodations.”
These ableist (and disproven, see further down on the linked page) beliefs clearly have an impact on the disabled population with respect to employment.It’s crucial that we work towards changing that reality, and in order to that it would be a priority to pay PwD support workers adequately. Hence, the crisis line would likely start off small, with paid workers, and grow as more funds become available.
All suggestions/thoughts are welcome—Don’t hesitate to email me at Kristen.firstname.lastname@example.org The more feedback, the better. Thanks, folks.
I don’t know about you, but my last few months have consisted of men’s bullshit, and my minimization of said bullshit, as a means of survival.
But today, today I say fuck your bullshit.
Fuck the time you laid in my bed, right after I clarified that none of the hanky-panky would be had, stuck your fingers inside of me and said, “I want this.”
Not, “I want you” Not, “I’m attracted to you,” and definitely not, “I want your consent,” just this, and your stubby fingers in my beautiful vagina.
Fuck the night leading up to the morning of your intrusive fingers, when I said I was too tired to sleep with you, and you kept kissing me anyhow. Fuck the fact that I said at least 3 times that I was sleeping, and kept my eyes shut as you penetrated me with your penis regardless.
Fuck the fact that when you left the next morning, after your fingers had been inside of me and your penis had gone soft twice, (to which you blamed the speed crash you were having, and not the fact that you were trying to fuck someone who wouldn’t even open her eyes for you) the last thing you said was “You could’ve been more playful, you know.”
Fuck the likelihood that many of you will read this and wonder why I said “I’m tired” and “I’m asleep” over and over, instead of “No.”
Fuck the reality that I wonder that too.
Fuck the fact that you still text me.
Fuck the fact that you don’t know what you did wrong.
Fuck the knowledge that I’m a statistic.
Fuck the way that knowing you for a year changed nothing.
Fuck the way that all my wisdom on consent, and violence, and self-care couldn’t change a goddamn thing.
Fuck the perception that I’m vulnerable, as a disabled person,and its tangible, undeniable, non-socially-constructed truth.
Fuck the fact that after you’d left, all I could do was lay there, with my face in your pillow and your smell lingering, thinking about how it was bound to happen to me sometime.
Fuck the truth that so many girls have been here, and can’t read this without crying.
Fuck the fear that this won’t be the last time I experience this.
Fuck the fact that this isn’t even what I wanted to write about.
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.