Sex Party Stoppers (Reasons Why PwD Might Opt Out of The No Pants Dance)

On a perfect planet, everyone would stop ogling the PwD-friendly sex party and just come already. But things (and people) are hardly ever that easy, and perhaps talking about the reasons that people are unable or unlikely to attend is just as important as the event itself.  Below are a few reasons why PwD might not show up at our gig.

nosex

  1. Vulnerability. Let’s just get the obvious out of the way.Differing levels of nudity can be awkward, because feelings of being exposed and seeing others exposed can be awkward, and make someone feel vulnerable or generally uncomfortable.
  2. Because Good Help is Hard to Find. “Sure, I’d love to help you go a sex party and get naked and possibly have sex with a person you met 10 minutes ago!” is not a sentence commonly uttered by caregivers, friends, or parents (who sometimes double as caregivers). This is a huuuge barrier in PwD being able to attend the party. Not only do us disabled people have to be comfortable with our own vulnerability, but we often have to find an attendant who is also comfortable, open-minded and willing to help. A situational diamond in the rough.
  3. Because Sex Can Be Hard Our culture puts so much emphasis on spontaneity, it hurts. Movies  and porn glorify sex that it so passionate and quick it almost looks entirely accidental (which is in itself, problematic..).   And for many and most of us, disabled or not, sex ain’t like that–but it doesn’t mean we don’t hold the spontaneity standard close to our hearts.

The spontaneity standard can hit some PwD pretty hard–as it often just isn’t possible with the amount of figuring that goes into great sex; and the planning that goes into our lives, generally. Andrew and I term this sex planning “sex-storyboarding,” and as much as I hate it, communicating what works and doesn’t sexually (and expressing that before, during and after sex) is the surest way to a positive sexual experience. Unfortunately, sex-storyboarding requires a lot of pre-requisites, including patience (on the part of both parties), self-awareness of likes/dislikes, position preferences, and ability to communicate these specifics. In short: Sex can be hard.

Add to that the fact that disabled people have been treated as asexual for centuries, and you have a group of people that have not yet been given the chance to explore or understand their sexual fantasies and the like. Due to lack of opportunity, they may not be aware of their sexual desires, or have indeed internalized that they are asexual, PwD may not be able to storyboard their sex, making sex even harder.

5. Because Money Sucks. The big one. A high percentage of PwD live under the poverty line, many on fixed incomes, and even those of us who are privileged enough to work often struggle to make ends meet. There are so many factors that contribute the the systemic oppression that keeps almost all disableds that aren’t Christopher Reeves (RIP) or Stephen Hawking,  broke–I’m not even sure where to start.  Ableism that keeps  us unemployed (“You just wouldn’t get the job done as efficiently in this busy environment…”). Ableism that treats us like thieves for needing help when we can’t work. Ableism that asks us to “prove” we struggle to work and “prove” that we’re disabled–even if our disability is permanent. Ableism that only hires those that drive/ bike/ run.

Lack of finances means so much–maybe it makes us unable to hire attendants. Or travel. Or pay cover. It’s just another sex-party stopper.

6. Lack of Personal Agency Y’know that ableism we just glazed over? It can kill your insides over time. This means that as a PwD, you might often feel out-of-control of your own life, as it can so often be dictated by those more able than, and the systems that govern them (think: medical system, housing system, personal care system). In terms of sex party attendance, this might result in PwD not even realizing or believing that they can actually attend.

In terms of practicality, if you’re a person with a disability that’s been institutionalized at some point (as many of us have), then you might not even be aware of your own ability to access resources (such as attendant care, accessible transit), and you might be limited in the area of personal agency. I was 21 before I learned how the Ottawa buses worked, people. Twenty-fucking-one.

Point is, ableism is such a strong force, that some PwD understandably think that they can’t access certain resources or venues, like a sex party. Because before now, they really truly couldn’t.

7. Safety Sometimes we internalize that we’re vulnerable, because everyone tells us we are. Sometimes we truly are vulnerable. Whether grounded in truth or stereotype, the belief that a sex party puts our safety at risk (even though the party will have safety proctors to prevent anything unwanted…) safety will likely be a factor that keeps many PwD away.

Please, add things I may have missed, my perspective is limited.

My hope is that this play party will be one of many, that this will in fact become more normalized, so that at the very least, people can move on to sensationalizing something else–and disabled people can have access to sex parties, no questions asked.

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We Need to Talk About Fear

Actually, I need to be doing so many other things, but the topic of fear has been laid on my heart like a brick.

Fear as it pertains to disability is somewhat of a given. It’s fear of the unknown, It’s also fear of letting go of long-held and abided-by beliefs and stereotypes. It’s all-encompassing and ever-denied by many ablebodied people. And I want to talk about why it’s so damn prevalent.

My experience with people that fear me (and they exist by the truck load) generally shows up in one of 2 shitty ways:

1. The person straight up says, “Your disability scares/confuses me.” Other versions: “I’ve never had a friend in a chair before,” “I don’t think I can be what you need.”

2. The person says I’m awesome, that they won’t treat me differently, or pity me, or whatever, and then treat me differently anyhow.

These are umbrella generalizations of the way fear is communicated to me, but they’re good starting points. Both are awful to hear, in any form, and both speak to a much bigger problem:

An inability to ask questions.

As a society, we’ve started to put on big “accept-everyone-as-they-are” uniforms, These uniforms are one-size-fits-all and comfy as all get out. They’r less constrictive, and represent a common agreement among many of us to be less judgemental. But when it comes to disability issues, these suits fail us. They fit all wrong, taking in and letting-out in all the wrong places.

I can’t keep up with my own weird metaphor, but what I want to say is this–We need to do the leg work before we become accepting of disability. (ahahah, leg work. Disability. #ableistlarry expressions). How can we possibly accept without knowing exactly what it is we are accepting?

I recognize that it’s not for others to judge us, and that asking too many questions, or the wrong questions, exposes an entitlement on the part of the asker. But I think that our overall frowning on said questions has made way for deceit and confusing behaviour when people feel afraid of disability.

This means that day-by-day, people say stranger and stranger shit, to cover the things they cannot ask and mask the guilt they feel around being unable to accept parts of disability. “I don’t think I can be what you need,” (which is both presumptuous and sets a harsh boundary), is born of an inability to explore, perhaps a lack of want-to-know. The question, if it were able to be stated without fear might look many different ways, like:

– How the fuck do you get through life?

– So, like, do I have to help you with a lot, or?

-How severe is your disability?

As much as I roll my eyes at disability questions (can’t I just forget about it for like, one day?) I’d take this over the alternative. Because disability is not an abstract concept. It isn’t socially constructed as race is. There is a very real, pretty poignant difference here, and just as I deserve to be treated as a person, you deserve to know what being friends with me might mean.

Now that it’s finished, I’m not sure I agree with this post. Thoughts?

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.

Asking for Help When You’re Sick

If you’re like most people, you turn in to the Devil when you’re sick. You re-polish and re-purpose all your favourite curse words and manners are a thing used only by the healthy. A simple “Please, could you just,” turns easily into a “Fuck you, can’t you see I’m dying here?”.  Your usual brand of “Oh ya know, same shit different day,” becomes, “Death, imminent.”

In more graceful terms, Emily Dickinson wrote of the state of pain, saying:

“Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.

It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.”

In short, pain fucks you up, steals your judgement and predictions, only promising more pain. This can really screw with a person, and when you sprinkle disability atop pain and illness, well, you know where this is going.

A major struggle with needing help when you’re disabled and sick is that it usually adds to the long list of things you need when you’re healthy. These added needs effect both the caregiver(s) and the PwD, as imagined:

“Hey mom, I need to roll over again. And also, throw up.”

“Hey kid. I love you, but I’m sprouting grays faster than Jack and I haven’t showered in four days”.

“Oh. Well. In that case, I’ll just swallow it back down.”

Basically, it’s hard on both parties, and usually both parties realize it. This means the caregiver is tired and burnt out and the PwD is acutely aware, once again, of their dependencies. It seems somewhat natural when the caregiver throws their own personal care out the window for the sake of their child, and the PwD throws some of their needs under the rug too. And everything goes to shit, really fast.

Another issue is that disability often crosses over into the realm of illness, and the two can be mistaken for related, even when they are separate.  This is most overtly seen in hospitals, where doctors and nurses are often overbooked and understaffed. This misconception can go either way, making all of a disabled person’s symptoms about their disability, or leaving it out of the equation entirely. It’s a human flaw, to compartmentalize things in the most digestible way possible, but it often causes professionals to be dismissive or over-looking in the medical setting:

“Well yes, these symptoms are common with someone of your disability.”

This phrase, heard over and over by many people with disabilities, is something that instantly tells the disabled person, “This is your sentence, and I’m not working to change it.”

This train of thought—that certain ailments are common with certain disabilities, may hold all the truth in the world, but they also hold a bunch of sneaky expectations:

  • The expectation that, since you’re disabled, you knew this was going to happen.
  • The expectation that you know how to cope with said information. (Go on, just pull out your book on how to be disabled and ok with it.)
  • The expectation that you’re ok with giving up, have no desire to look into alternative options, and are ready to throw in the towel.

It also separates the medical professional from the PwD, intentionally or not. This separation happens the minute the PwD is told, “Well, someone with your condition will likely..”. It is not done on purpose, and may be done with good intent (defining risk, preparing people for future challenges), but it is still a category nonetheless; A lump of people grouped together because they are likely to experience similar health difficulties. It puts the disabled person in a league of their own, dealing with a life of their own…and I could write a whole other post on how creating space, “othering” destroys empathy, which ultimately, steps all over compassion.

As with the other posts on the effects of asking for help for PWD, this one points to the ways in which disabled people end up shoving their asks under the rug. It’s kind of all over the place, but the point remains that sickness “ups” level of need (just ask any grown ass adult who asks their parent for soup), and disability can make us swallow our needs in silence, in both home and medical settings. Both situations can be overwhelming, and both are relatively difficult to solve without more resources and a paradigm shift in some of core beliefs about disability. Sadly, this blog doesn’t have answers, only hopes to shed light and provoke questions. It is however, one of the reasons I think there should be counselors who work specifically with people with disabilities, the same way there are counselors for people with mood disorders, women who have been mistreated and survivors of war. Disability is an entity on its own, sometimes.

 

Needing Help During a Fight

When you need help in life, Life can decide who helps you, for you. This is usually alright, assuming you get along well with most other humans, especially the one who pushed you out of her vagina. But if you have a tumultuous relationship with the person helping you–or even just a one-off blow out with them, things can get more than messy. Here’s a few times when interpersonal conflicts can mess with asking for help.

Being in Conflict with a Parent

Everybody has conflict with their parents, it’s a right of passage that starts the minute you bust through the vaginal canal. In movies, teenagers with too much eye-makeup make fighting with  family seem like an art-form, with their precocious vocabulary and dramatic exits. When you’re a real-life teen with a disability however, this fighting involves a lot less grace and minimal opportunity for dramatic walk-offs.

Whatever. Ground me then. I don’t care,” Says you, with teary eyes and legs that twitch with the weight of your emotions, giving it away that you actually do care.

“Fine. This conversation is over,” says parent, who’s over dealing with your adolescent brand of Brat, and having a teenage kid.

Fine.” Remember when the last word was everything? You’d practically spit it out, and plan to leave triumphantly, only hahaha, you’re disabled–Leaving quickly just isn’t an option for you.. Don’t give yourself a heart attack trying to leave the room  quickly(while actually moving slower than a snail, because you’re mad and you forget what moving feels like). Joke’s on you.

The rough part about fighting with a parent is that your disagreements with them serve as a way to test  limits and try your hand at independence, and this is mostly true for everyone, regardless of ability. When you live with a physical disability, this assertion of limits can be elusive or non-existent, simply because you have to rely on a parent for basic things like bathing, eating and getting in/out of bed. Let’s say this quarrel happened right before bed. You may have eventually succeeded in leaving the room, but you still have to “let them” help you get undressed, or wash-up, things that many people take solace in doing independently, as part of quiet time.

This boundary-crossing is inevitable for most physically disabled people and their parents, if their parents are also their caregivers. I believe that it can make it tough to decipher how to “hold true” to your thoughts and feelings in the future. “I still need help,” starts to feel like, “I’m sorry” or “I was wrong,” even if neither of those things are what you mean to convey. It’s difficult to feel like you’ve drawn a line in the sand when that line must soon be wiped away due to physical care needs.

Interpersonal Conflicts With Significant Others

Should we discuss this? THIS ONE SUCKS. Depending on the nature of the relationship (healthy/unhealthy) the conflict varies. What remains the same is that you need help. The independent factor is the reaction of your S.O. to the fight, and their decision on how they will treat your needs afterwards. Saying, “So, I’m still mad but I need help with pants.” is like punching yourself in the stomach, and yet it has to happen, provided you’re not a nudist.

Add to that said S.O. might decide their anger is more important than your being dressed or mobile, and you have another reason to never make yourself vulnerable again.

Interpersonal Conflict With Unrelated Caregivers

Some of us people with disabilities are privileged enough to have attendants, people who come into our lives and help us with personal care stuff.Many of these people are great in a thousand and five ways, but there will always be those that rub us the wrong way. This is troublesome, as the nature of the attendant’s job is personal, and this means that any disagreements often find their way into your personal life for longer than it might otherwise. If you have a falling out with a friend, you can choose to leave their life. If you have a falling out with an attendant, they’re generally in your life until someone above them (their boss) deems your reasoning “enough” to not have to see this person again. And if that happens, bare in mind that substitute assistance might not be available when to you need it. Pick your battles. Learn to play nice.

Please note that while all of these things are factors that sometimes keep PwD from asking for help, they are not meant to assign guilt or blame. I think that everyone’s experience with disability is different, but that many of us can relate on some of these matters. As always, my intent is to discuss, not exclude. Let’s talk.

The Inside Scoop on Helping

The other day I wrote a blurb called The Price of Helping. Unexpectedly, a lot of people found it relateable, and as is such, I want to unpack it further. Here’s post 2 of 1,378 on this topic.

Why We Won’t Ask

A lot of academia on vulnerability talks about pride being a major block in our ability to ask for help/ reach out/connect (which, in Brene Brown’s research, are all very interwined, though I’d beg to differ this point). Pop culture is saturated in the idea that pride is what keeps us from admitting our weaknesses to ourselves, and holds us back from connecting, professing love etc etc. Here’s the thing though: Most of the time, pride is not the problem.  At least, not the whole one. Below is one  of the things I  think explain  some of our reluctancy to ask for  help, in more detail.

The Close Connections Between Laziness, Learned Helplessness, and Legitimate Disability.

These three are bed buddies when it comes to asking for help. They’re all over each other whenever a person thinks, “Shit, I might need help with [filing my taxes], [speaking a new language], [getting a boyfriend], [finding a job]” Immediately questions about whether or not you can actually do any of these things start tumbling around. You think: “Maybe I could do my own taxes, if I actually put in the effort, but maybe I’m too lazy. Or maybe I’m actually not smart enough. Ah, it makes me feel like death just thinking about it.” These are things everyone worries about, disability or not, and it speaks to the layered nature of the reasons we don’t ask for help–we wonder where our abilities intersect with our personalities , and where we’re just fooling ourselves.

Throw disability on the table and you’ve added another layer, the layer of stereotyping and other bullshit. When it comes to disability–physical, psychological or invisible– you’ve got a mothership of a stereotype that says disabled people give up on their lives. This is properly termed under “Learned helplessness” which more specifically refers to that moment in time when you could probably do something if you tried hard enough, but for whatever reason have opted out of doing so. Specific to disability, it defaults to disabled people deciding they can’t do much of anything, and as a result, said disableds live a quiet existence full of Nothing Much.  The dilemma is similar to everyone’s dilemma around asking for help, in that it’s hard to say where our abilities end and our bad attitudes begin, but gets more complex when you throw in the dash of judgement that comes with disability. Here’s an example:

Everyday, I shower in the interest of cleanliness. Every day it’s a bitch to do so and I wish being dirty was a realistic option. Everyday my attendant (carer, person who laughs at my jokes out of politeness and helps me live another day) watches me struggle, drunk with sleep and disability, moving from chair to tub to scrubadub chair. Some days, I want nothing more than the teensiest of help moving my crazy spazzy temper-throwing legs over the lip of the tub, and sometimes I ask for help. Depending on who’s helping me, the help will either be given or not. Some will look at me firmly and say, “You can do it.” Others will gleefully oblige, laughing at my zombie-state, and move my legs for me. Point is this: My disability is fluid (as disabilities are), there are good days and bad. Sometimes my spasms are worse if I’m angry, upset or highly emotional. Sometimes I’m just asleep. And sometimes, I’m a lazy motherfucker.

But every time, I’m reluctant to ask for help. I’m reluctant because of the judgement that fuels an “I know you can do this.” Because maybe if I ask, you might think I’m falling into a slump, as wheelies do.You might think I’m gaining weight (heaven forbid), you might judge me as a faker who makes their disability out to be worse than it is, and then I’d be considered disabled aaand “crazy”. All this considered, sometimes it’s just not worth the ask.

From where I am, it’s crucial that we examine the ways in which we judge ability, disabled or not, when looking to gage legitimate need. Think twice about what you think you know about the person asking for your aid, and why you feel the need to decide what is acceptable to help with.Chances are, if the person has willed the courage to ask, they are very much in need.

The Price of Helping

One of the toughest parts of being disabled is having to interrupt other people’s seamless lives. People are minding their own business, drinking coffee, or doing work, or sleeping, and you’re all, “Excuse me… could you just help me [not spill this drink], [put on this coat which has either shrunk, or I’m more disabled], [hold this object which I can’t even remember why I’m carrying around]…Thanks.”

The worst is when someone is sleeping. Ask any wheelie; Hell hath no fury like an ablebodied woken from slumber to help you with your existence. As proof, I have piles of memories that involve yelling for my dad to wake the fuck up and help me pee, only I was 7 and “fuck” hadn’t joined my vocab yet. I’d scream and yell monotonously, and hopefully, eventually, dear old mom or dad would saunter in and save me from my bladder, half asleep and wishing their kid could take her own goddamn self to the toilet.

As far back as I know, I’ve felt horrible about this. I’d feel so relieved that I wouldn’t have to wet the bed for the 50th time that week, but simultaneously awful when I’d catch a glimpse of their tired faces. I’d often wonder if my dad was even awake, or just sleep walking (which, when you’re a kid as crazy as I was, can actually make you pee yourself from fear. Kinda counterproductive).

This past summer, my friend Andrew stayed at my place for a few days. He slept on my pullout…and for all who don’t know, Andrew and I are pretty similar, except he has a little more CP and a lot more gay than I do. On the first morning of his visit, I heard him stirring, and then a whispery, drawn-out “Krisssten” coming from his direction. I looked at my phone. It wasn’t even 6:30a.m. Yeah right.

“Kristeeeennnn.”I shoved my face into my pillow and knew I had to answer, I had to get up.

“I don’t even know if I can help you, Drew.” I said grumpily, and focused on dragging my spasmy self out bed. “One sec.”

I found my way to my wheelchair and Drew told me that he just needed help [rolling over]. We laughed for awhile about how said rolling would happen, but surprisingly, we figured it out–not without Drew giving his usual falsetto, “Cripples helping cripples!” pump-up, which I’m positive contributed to our success.

In the moments leading up to the roll, I felt the resentment I thought my parents had carried (whether real or perceived). I was annoyed that I had to move. Did he really need help right now? It was so early. Couldn’t he just wait?

And then I felt the pang of the little girl that woke her parents every night for 15 years. The one who always thought, “I’m sorry, I just need help with this one thing, and then I’ll be fine I promise. And it hurt. It hurts when we make other people’s simple physical needs about our inconvenience. It hurts knowing that the one needing the help so often carries the burden for something they cannot control.

I guess this a roundabout way of talking about the need to be more conscious of the price we put on helping others and being helped. When helping with physical (or emotional) needs, there’d ideally be no shame, no apologies, no unwavering guilt. But this will only happen in a world where we are aware of ourselves, and where help is free.

My idealism gets the best of me.