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.
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.