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.

When Disabled People Pay for Sex, It’s Jus ‘Cuz

Ever since The Sessions came out in 2012, there has been this pocket of fascination around the role sex surrogacy can play in disabled people’s lives. The topic has lifted the brows of all sorts of people, from health-care workers, to sex workers to disabled people themselves, and (finally) people have started saying what they already knew deep-down: Disabled people have sex.

It’s been great really, finally being able to write that out loud. And it’s liberating to write the follow-up sentences: Sometimes disabled people exercise their own choice and pay for a prostitute, and, Oh yes, disabled people are indeed sexual, sometimes they will even pay for it. People everywhere are starting to understand, actually, that disabled people are just as sexual as the rest of humanity, and it’s dandy.

Only, this post wouldn’t be happening if it were truly dandy, so let me walk you to the water. In all the upcoming awareness about disabled people and their relationships with sex surrogacy and prostitution, people are (somewhat inadvertently) enforcing an old, essentializing stereotype: That disabled people who have sex—free or not—are fucking badasses.

This morning I gobbled up an article detailing the reasons why disabled men have paid sex. The piece referenced a small study, and claimed that men with disabilities have paid sex as an assertion of independence, and to “prepare them for real relationships.” The article briefly mentioned how this provided an alternative avenue for sex when the guys didn’t know where else to get it.

In response to these “findings” I just have one question: What’s the difference between a disabled guy wanting to get his rocks off with a girl he’s trying to forget he paid and a ablebodied business man wanting to spend the night with a pricey lady stranger? Is the businessman not also asserting his ability to fuck? Isn’t he too trying to fill the abyss of lonliness that tugs at the edges of his heart? Is he not, in some way, giving himself a “life experience,” that may or may not ebb positively or negatively into his future relationships? Why is this special/significant then, when it comes to wheelies?

There’s also this article, which discloses one paralyzed man’s search for a woman to meet his sexual needs. He views his sexual expression as an important part of his self-identity (which it is, duh.) He also seems to internalize the fucking-makes-mebadass idea, as he says, “live with [the disability] in the best way possible, and not to exclude anything. You can still be a rebel on two wheels.”

I’m by no means faulting this guy—I’m guilty of the same thought process. I’m mentioning it because internalization is a good indicator of the power a stereotype holds. This guy wants to get laid because getting laid needs to happen, and also because he’s a “rebel”. For you know, fufilling a human need. Maybe he could go all-out and eat some veggies while he’s at it.

Are all the men who sleep with women rebels? Are the guys who pay for sex super-badass? Why is it that we have to make sex and disability its own entity, when the current explanation,“Sorry to bore, but I’m actually just like you,” will do just fine?

Please, stop discussing our reasons for paying for sex as if were badass or exceptional. As is the case with anyone, it is what it is, nothing more, and certainly nothing less.

Angry wheelie out.


For all my bitching about disability struggles, I could stand to blog a bit about disability privilege. No, I’m not talking about getting the parking spot closest to the mall door, or front row seats at movies(though those are definite situational perks), I mean the different ways in which different physical disabilities dictate how we are seen by others. Here, I’ve arranged these in a chart, because, easy:

Societal Hierarchy Of Disability


Before everybody goes ape snatch over my essentialist pyramid, allow me to make a cluster of disclaimers. Firstly, I made this up, just now…like everything I post here, unless otherwise sourced. Secondly, I am acutely aware of the troubling affects of generalizations, and issues around defining words like “slight,”I use this for definitive purposes only. Thirdly, acquired disability (caused usually by injury or accident, not from birth), can be worse physically than many Forever Disabilities (I term I came up with, to describe disabilities had since birth, that are never ever ever going away) but I think societal approaches to acquired disability are a little less condescending, which I’ll discuss. Quatro: This post will only address social views of disabilities, and how certain attitudinal changes happen with different disabilities. It is NOT (Never! Not at all!) a reflection of the disabilities themselves or the people that live with them. This pyramid is to meant to raise questions, bring about brain synapses, and maybe start mouths flapping. Let’s talk about it.

Claiming Personal Privilege

Of course, my vantage point as a person in the second -to-bottom category brings about an inescapable personal bias—and that’s also where a lot of my privilege comes in. So let me disclose quickly, in the interest of fully “claiming” privilege. I’m a white girl, who lives in Canada, and doesn’t need to have her parents help her with personal care. I’m mildly conventionally attractive (Thin? Nice teeth? Apparently I’m also conceited.), and I have full verbal capacities. I’m also educated and have part time employment at my disposal. I’m pretty damn privileged.

CP Privilege,

Since Cerebral Palsy is my story, I’ll use it as a starting point. Ever since undergrad, my friend Andrew and I have titled our type CP the “jackpot” of disabilities. It’s not, actually, we were ignorant fools in undergrad (ok well, at least I was). But there are a few positives to this disability as I experience it:

  • Some of the symptoms of CP, such as rigidity and muscle spasms, can be improved through therapy. If therapy is maintained (hah. No.) then your ability level can increase a fair amount, relative to how you define fair and the severity of your CP. It’s like Choose Your Own Adventure for disabled fitness.
  • People often think you’re paralyzed. Again, limited to my type of CP, which is experienced mainly in my legs, but not actually, it just takes a while longer to notice the other weird spasms happening everywhere. Keep in mind that I have “full” mental capabilities and am markedly free of speech-impediment. As such, I often “pass” as someone who used to be able, but no longer is. This is great while it lasts, as most people don’t question your intelligence when they think you once walked. Which brings me to…

Acquired Disability Privilege

I can only tell you what I know from being mistaken as paraplegic. A few years ago a coworker of mine approached me, saying he had a personal question. He sat down, slouched comfortably in front of me and said, “You take really good care of yourself and you seem to like it here. You’re always pleasant, but I…” He trailed off.

Anticipating his question I said, “You won’t offend me, just ask.” (OOPS, YOU’RE IN MY BLOG.) He laughed nervously and then said, “You’re accident must’ve been hard to deal with.”

I smiled and explained that I wasn’t paralyzed, but that depriving my brain of oxygen at birth was probably pretty rough. I told him I was born too early, that my brain had taken the bulk of it, and that brain damage was the result. In the milliseconds that followed, I watched him go from confused, to understanding, back to confused, to generally awkward. He shifted in his seat and said the ever-famous, “But you’re sharp…and good at your job.” When people say this, I have half-a-mind to punch them, but they mean no harm, and some people that have CP are affected intellectually, so a simple, “my intellect is intact” is usually all they get.

Point is, in finding out I didn’t used to walk, this guy started doubting my intellect, and my capabilities. It no longer made sense to him that I could excel without having been a walkie. And in a way, that’s acquired disability privilege.

Severe, Purely Physical Forever Disability Privilege

Say what? I see this newly-made-up category as those people that have severe physical disabilities, from birth to beyond. Generally, when society finishes treating them as a tragedy (as is sometimes incurred with many and most physical disabilities), they can then move on to doing whatever they do, without questions about intelligence, because their disability is purely physical.

I’m stopping there, because I don’t fit this category, and writing as if I know a damned thing is causing me to break into a nervous sweat. I do not want to minimize other barriers that those failing into this category may face, only to mention that when your disability is “purely physical” (as mine is not) I should hope that people don’t constantly question your noodle’s capacity. Noodle.

And here lies the end of this likely offensive post. If you take nothing else away from this, I hope to stir your mental cauldron on how different disabilities are received and perceived. Thoughts welcome.

How The Disability Blame-Game Works

Having a distinctive trait that separates you from “normal” can easily become a go-to excuse for all of life’s problems. When that trait is living with a disability, it can soon mean that nearly everything is fair game to be blamed on physical impairment. Much of this blame may be legitimate, like “Oh, I can’t go to your house because you have stairs, no strong people to carry me, and you’re just another jerk who won’t build a ramp.” Or, “Oh, no, little child who wants to play in my wheelchair, you can’t because I actually can’t get up”

These physical/spacial barriers in life (stairs, small spaces, hilly places, inaccessible bathrooms, secret coves) are the easiest to pin-down as #disability problems, but from there on in things get a little messy. As a wheelie, I have time-and-time again asked myself “Is this me, or my disability?” usually pertaining to issues of employment, schooling, friendships, sexships, everything ever. It’s a burning question, and is always sitting comfortably in the back of my mind.Here’s a breakdown of ways disability can bare the brunt of blame for issues other than physical blockades. Keep in mind that this blog is based mainly on my experience and the experiences of other disabled people who have been kind enough to share their thoughts with me.

Jobs/ Job Problems:

Negative internalizations about disability are a real bitch. In the realm of employment, if you get a job, you often wonder if you only got it because the company had to fill their disability quota. If you don’t get the job, you might wonder if it’s because the company didn’t want to take-on whatever accommodations you may require–be it more office space or general awareness of your disability issues.

Either way, if you’re accepted or rejected in the employment world, it’s almost impossible to figure out what’s your fault as a person and what’s an unchangeable result stemming from your disabled status.

Another thing encountered in the work environment is genuine surprise when you complete a task well. This is not meant to bash anyone, but sometimes I think people are unwittingly baffled when disabled people are actually being useful, as it doesn’t fit with engrained stereotypes, and our perma-spot as the “needy wheelie”. When this happens, it causes the PwD to question themselves in a “Did they expect me to fail?” way. It also plants doubt about whether compliments are genuine, like, “Did I do good by human standards, or wheelie ones?”(which are inevitably lower, since your life is harder—we expect less of you, don’t worry).

If you take disability out of the equation, it’s a little bit easier to breath. When you get rejected, it’s because you weren’t qualified, or your bedside manner sucks, or you blew the interview, like the fool that you are. All of these reasons are manageable things that can be improved upon/changed. Disability not so much.


I feel bad about addressing this, because I write about it often, and also because I suspect I’d be nearly as awful at friendships and relationships if I were able-bodied. The questions around social relations with others revolve (again) around not knowing whether your excluded because of your disability or your personality. I only went to one high-school party in my entire 4 years, and the whole time I was beyond baffled that I had even been invited. Sometime during my high-school period, I had 2 child-like high-school “relationships”, who I thought of as: “people who liked to look at me, laugh at my jokes, and make me terribly squeamish by holding my hand”.  Clearly, thriving in the social world was not my thing, and while I was well-liked, I was never really accepted.

It remains a mystery how much disability has contributed to my social troubles. My inability to achieve peer acceptance could be two parts Kristen’s really fucking intense and one part I’m disabled, how does socializing happen? In truth, I just don’t know what’s what, and it’s really tough to know when I need to take on the task of self improvement.

I originally wrote more, but this post is becoming overly self indulgent, so its ending here. Knowing the lines to draw regarding what is and isn’t a result of being disabled would help me individually, as well as helping other PwD to acknowledge and understand the roots of some of their struggles better.

…And for this reason, they should have shrinks who dedicate themselves entirely to clients living the wheelie life. I’d pay big bucks to be a part of that.

Why Being Disabled is Actually Being Old

Disclaimer: For anyone who takes this blog seriously, firstly, shame on you. Secondly, I’m about to lump two completely different populations together for the purposes of making meaning out of my circumstance. It’s not meant to offend, and if you know me, you know that when I’m serious (roughly once every 3 months, just to make sure I can still do it), I’m staunchly against stereotyping and gross generalizations. This post will likely be based on my own life experience only. If it gets your panties in a knot, you can email me here, or click the corner “X” and get caught up on your Netflix.

What follows is a list of things that make physically disabled people(even if they’re young) and “old” adults (read: 70yrs+) as about as distinguishable as the start of an infinity scarf.

1. The Slow Lane:   Visit the slow lane of Anywhere Ever. Whether it be the shoulder of a busy road or the leisure lane at the local swimming pool, I guarantee you’ll find a wheelie and an old person truckin-it at their own pace. Watch carefully as the older person nods an “Aw really good to see you out,” smile at the wheelie, and the wheelie smiles back like, “Yeah, we’re slow together!”

2. Loudtalkers: The amount of loud talkers I’ve encountered in my life makes Sinefield’s The Lowtalker seem like a beautiful anomaly. Just last week someone introduced me to a curiously hot guy (you know, when someone is hot but you’re not sure why, or maybe you’re just tired), when he opened his mouth and killed all my uncertain fantasies: “HI–I’m BrIIAANN, HOoW Are YOUUUU?”  In the span of one sentence, curiously hot Brian became curiously ignorant Brian and I was left wondering if i needed a hearing-aid from the potential damage his screaming caused.

Older people experience loudtalkers too, even if they have the hearing of a bat. And no matter what age, I’m sure it never gets cute.

3. “Are you OK?” I was in the grocery store today when a woman in her 40s ran into a woman in her 70s. The younger woman looked bewildered for a second, but quickly recovered and said “Oh hi!” (I’m not sure the younger woman remember the other woman’s name)…”How are Youuu doing? Are you–are you ok?”

Maybe the older woman had battled illness recently. Perhaps she was struggling with her family. Maybe there was an awesome reason for this young lady to forget her tact and immediately ask about the older lady’s state, but i wouldn’t be surprised if absolutely nothing had warranted such a question. Asking an older person or a disabled person about being “ok” is nothing short of annoying, unless they are undeniably struggling.Questioning if a person is ok without reason suggests they look unstable–something I, as a disabled person, feel constantly without verbal cues from others. Have respect, especially if the person you’re addressing is twice your age, as I’m pretty sure in all those extra years, they’ve had to learn to ask for help at one point or another. Usually, if they’re not asking, they’re just fine.

4. Having to be ok with things that anyone else would throw three fits over: Sometimes, entry into the Golden Years can mean loss of control. In fact, eventually both getting older and/or being disabled means loss of control somehow. Maybe when you get old, the retirement home you live in will only serve bacon on Saturdays and you’ll need to wait around for someone a third your age to make sure you don’t trip walking to the toilet. As a wheelie, I anticipate getting older to be a breeze, because I’m a young person in old person’s Doc Martins already. I picture my first conversation with my contemporary retiree roommate to go something like this:

“Oh, you’re body’s moving 10x slower than your brain for no real reason?” I ask, turning my face slightly away from the ever-engaging window.

“Well yes, and it’s difficult having help for things. I don’t want to become helpless” my hypothetical roommate says.

“Pfft, you got this. Start thinking about the stuff you can do while waiting for youngsters to figure out how to help you. Sometimes I make grocery lists in my head,”

“Mmm” she states, unconvinced.

I don’t wanna brag, but dependence is kind of my gig.”


5 “Here you go, Dear.” If disabled people and older people combined all the dimes they should collect every time they’re called dear, disability income and retirement funds would be obsolete. And believe me, “dear” is the verbal head-pat of the English language, which is only ever appropriately used by older people (because they’ve earned it, by living while you were still a pre-sperm) , not to address  older people. 

6. Being thought of as wise. Every once in all the time, false stereotypes about one group leak onto the viewpoint of another misunderstood group. Older people are often thought of as wise, and while they might be because of their life experience, there’s an equal chance they’re set-in-their-ways and would rather finish their morning crossword then tell you about “back in their day” for the 300th time. People are people…Some are wise and some are the opposite of wise (foolish?) I don’t know though , because I’m not a wise wheelie. So stop telling me I have ‘so much insight,’ and treating me like your shrink. I can drink you under the table, and I [still] don’t know why men are assholes.

7. Mobility Issues, This red Smartie was saved for last because it’s most obvious.

And I’m sure when wheelies become old, a small part of the world implodes and a black-hole shouts, “Been there, done that”.


“The Disabled” Problem

I was doing my usual skim & sip of one of my Social Work textbooks, a game where I sip coffee much more than skim any words–until I came across my favourite topic: disabled people. Every time I read about people with disabilities in any of my schoolbooks, a little voice in me shrieks, “Oh no, please do this right,” as if the authors of Policy and Legislation for Social Workers are somehow listening. This particular section of the chapter was on social assistance, specifically the people who are most likely to access it. My heart fell as a whole chunk of the paragraph was about “the disabled,”not because many people with disabilities would take a job over tax dollars any day, but because of the terminologyused. “The Disabled,” is a phrase I thought went out with the whole let’s-put-wheelies-in-asylums thing, but I guess not. What follows is why the term bugs me so much.

Perhaps most obviously, putting “the” in front of anything–whether it be food, a name, or your favourite conditioner (the fruity stuff), two things are happening: 1) You’re differentiating, and 2) you’re finalizing. “I want the Justin Bieber haircut” (gross), is quite different from “I want a Justin Bieber haircut,” (still gross, but you’re risking a generic ‘do that makes you look like more like Tegan & Sara or Miley Cyrus than Beibs). The use of “the” allows people to be specific, and differentiate from all those Beliebers who just think short hair is convenient. I’ve taken this example three lines to far, but my point is that “the” separates. In the context of wheelies, it makes it sound like we are an alien race. “The Disabled” is right up there with “The Blacks,” “The gays” and “The Extraterrestrials”. People with disabilities are not a distinct being, they just are.


Then there’s the “Disabled” part of this phrase. My issue with this is simple: The word “disabled,” standing alone or not(not standing at all…–___–), is an active, not passive descriptor. By nature of the term, it is understood that the person actively plays a part in maintaining a disability. It almost sounds like an ongoing affliction that needs keeping up, rather than a circumstance that just is. Humour me on this for a second. Think about if we were to say someone is “Blacked” or “Gayed” or “Womened”. We don’t because guess what–that’s doesn’t make sense, and would be incredibly offensive if it was accepted as proper English. Why? Well of course, by saying someone is “Gayed” were implying that their being gay is a circumstance they choose or have been chosen by, rather than just a sexual orientation they identify with. Looking at it from this angle highlights the need to look at people as having disability, rather than being “disabled”.

Anyway, whatever. I think my textbook is due for an edit, and I’m due for Sunday Wine.