Dating w Disability Doesn’t Give You a BS Filter, it Gives You Trauma

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.

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A Disability “Rough Patch”: The Shit No One Tells You

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:

  1. 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.
  2. 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.
  3. 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).
  4. 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.
  5. 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.

 

I fell on the floor on purpose.

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:

  1. 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.
  2. 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.
  3. 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.

 

 

 

Faces of Self Care

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.

  1. Pulling my hair of my face. Because I like my face,
  2. Waking up earlier than I need to. Because then I’ve already done something right, even if it is only 4:30.
  3. 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.
  4.  “You’re doing good enough, in that you’re doing it.”
  5. Not procrastinating. Hahahaha, yeah right.
  6. Procrastinating.
  7. Netflix, see 5, 6.
  8. Recognizing what I’ve succeeded at today. #thisblog
  9. Telling someone who deserves it to go fuck themselves.
  10. Trusting my gut.
  11. Only doing what I want to be doing. Selfish self care.
  12. Believing my perceptions, and allowing myself to feel my own feelings.
  13. Forgiving my own ongoing anxiety. Remembering that everything is one breath at a time.
  14. 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.
  15. 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.

More Reasons to Have A Sex Party Including PwD

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.

Due to all this shitty, sensationalist, off-the-mark coverage, I’ve written reasons why this party needs to happen. Because we need to take a step back and remember the facts.

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 efuck-yes-meme-generator-fuck-yesexacerbate 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.

Wheelie Dating Struggles: The Case of the Casuals

shrug

The struggle is still happening. Here’s what’s come up recently.

Casual dating is virtually impossible. And that sucks. Because I live in a world where nothing is casual–people come to help me at pre-booked times, and many aspects of personal care are discussed as though the world might fall off its tilt, even if it’s just about not having paper towels or something. A lot of what I can and cannot do revolves around the care I’m able (or unable) to access. This makes a lot of my life feel whatever the opposite of casual is–intense?

Anyway, I’ve tried to dilute intensity for both myself and others by taking a dog’s age to get to know sexual partners. My figuring is that if I know them well-ish, I can feel safe(r) and eventually explain just how disabled I truly fucking am, without watching them walk away. But therein lies the horrible truth: Nothing about vulnerability is casual. 

It’s a shitty conundrum, really, because I’m dying to have consistent casual sex, if only to say that I can. Also getting laid consistency is really…nice. So all my intensities take a back seat and I pretend to be more [able], [independent], [closer to “average” in whatever way I can fake]. I don’t tell them that I need help showering. I don’t mention that I attach to others quicker than you can say cool whip. And I definitely don’t let them know that  I can’t do a five-day work week because 3 days of work completely drains me.

I think  I’ve gotten better at communicating  that “Friends with Benefits” is an appropriate label for whatever type of relationship I’m gunning for, even though the process by which I do this seems anything but casual or friendship-y. This title allows me the freedom to fuck, without the burden of another’s judgement. In other words, I can escape your ableism, I don’t have to pretend like our lives our similar, because you won’t ask me about my day. I don’t have to watch you realize how different me and my circumstances really are–and then reject me on that basis. I don’t have to watch you take an interest in me because of my difference, and then lose that interest when you realize there’s nothing to see here. All this is curbed by never exposing myself in the first place.

Except, in my experience, sex doesn’t work like that. Not my sex anyway. I all-but have a check-list  of things I need from a sex friend– attractive, kind and the world’s best communicator, laughs at my jokes, the usual. Because to me, this person can’t just be a hot bod. They also have to be someone that can handle physical vulnerability in a partner. And if you are one of those people, well, that sucks, because I’m going to want more than casual from you. I’m going to want to be your friend and buy you things and making Christmas stockings with the names of our to-be kids on them and shit. Because you’re a fucking unicorn.

And here I am, back at square one, wondering how I can have my cake and eat it too.

Wheelies Coming Home for the Holidays

This blog deals with wheelie issues, but uh, pretty sure everybody’s got something to say about the holidays. Here’s my say on stuff you notice as a wheelie going home for winter solstice, the stuff that differs from the day-to-day. This post assumes that said wheelie has the means and opportunity to move out, and as such, has the choice to visit family during designated times, though not everyone (wheelie or not) has this option.

1. It’s Back to Screaming. When you’ve had the opportunity to live on your own for awhile, you forget what it is to scream for your parent’s help, until you’re back with ‘em. When you’re not visiting the parental units, mumbling swear words to yourself and making mental notes about how to do life more efficiently becomes custom ; If you fall over, or drop a plate, or fall over again, you assess your options and then call for help on the phone if need be. When visiting the fam, there’s no helpline,things are less wheelie-friendly, and you go back to the good old days of yelling for the assistance of your trusted family members.

It goes something like this:

“Mom. I have to go pee.”

“Ok, honey.”

Mom walks upstairs, does laundry, goes pee herself, forgets you exist.

“Mom. Come back? Mom!”

Here’s a very accurate portrayal of the common occurrence of yelling for help, which I feel describes a large chunk of my early life:

^^BUDDY THE ELF.

2.You’re Overly Sensitive to the Head-pats of Relatives After entering ‘The Real World’ and realizing that wheeie condescension is a real, documented thing,(you weren’t just imaging it, all these years), your relative’s abundances of affection can feel a little off putting. Your grandma goes in for the kill, arms wide and ready to embrace for two minutes too long, and you have to remember that she’s your grandma, being a grandma, and not a douchebag who thinks it’s cool to hug you for no reason.

3. Dressing is Optional When you lived at home it was very GET-DRESSED-FOR-SCHOOL-BEFORE-PARENTS-HAVE-TO-LEAVE-FOR-WORK,-OR-GO-TO-SCHOOL-NAKED. Now that home is a vacation destination, everyone is much more relaxed about whether or not you wear presentable clothes at 3:00 on a Tuesday.

let-it-go

4. The Fucking Wheelie Chair on The Airplane. Have you seen the mechanism they use to transport wheelies from wheelchair to flight seat? Here:

aisle-chair-2

Armrests are for wimps.

I’m an adult who goes through life using a child-sized wheelchair, and that damn transport seat is too small for my butt. Seriously, I can feel my future bum cellulite folding over the sides. Thanks gravity.

5. Weird, Awkward Transfers. In wheelie life, transfers happen when a wheelie moves out of their wheelchair (gasp! Stop, you’re scaring me.) and onto another spot, or vice-verse. I like to think of it as standing to sit again (it’s incentive). From chair to sofa, sofa to chair, chair to toilet, chair to bed, you get the idea.

When you’re 17 and used to the set-up of your parents house/ apartment, you find creative ways to do these transfers, assuming your house wasn’t built with your disability in mind. When you’re twentysomething and you return to the same spot (or a similar one), the transfers you once figured with ease now seem mind-boggling. Like, How the fuck did I do this everyday. Oh, aging, you’re such an undermining sneak.

6. Aging Parents Speaking of aging, dear ma and pa are doing the slow crawl towards death, noticeably more-so every year. This means that any assistance they give during your visit becomes a bit more of a struggle and you realize with a start that everyone has an expiry date. Eventually, this will lead you to think of other “care options” like getting a boyfriend who loves you a lot or hiring a friend. But for now it’s just a simple reminder that nothing is permanent, or to be taken for granted.

Add-ons welcome, eerbody’s different.