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.

 

Help Create a Crisis Line for PwD, by PwD

 

phone-wheelchair-users-sign-31075305

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.williams10@gmail.com The more feedback, the better. Thanks, folks.

Dating A Hippie Who Isn’t Actually Very Hippie.

I just got out of this shitty relationship. Shitty because, when it was good, it was really good, and when it was bad I wanted to stick my head in an oven. The guy? Dude’s name is actually Tim Kitz–I won’t be complicit in the protection of abuser’s identities. Stay away from him, friends.

Anyway, Tim seems like a hippie in the hippiest of ways, with trademark unkept hair and a commune-like living style. The type that cleans out plastic cups so he can recycle them, and turns dinner conversation into a deconstruction of capitalist ideals.

On paper, Kitz seems fantastic.He knows all the relevant feminist-progressive ideals and when to slip them into casual conversation. He, like me, seems to have a huge hard-on for radicalism and equality, and enjoys analyzing the places where the two intertwine. He’s also super affectionate, and spends more time touching me than, well, not touching me when we’re together.

When push comes to shove though, he is not even close to being the things he portrays and purports to care about, and it’s become more and more evident that a lot of his radical thought and progressive beliefs in things like “listening and validating others” and “not being a manipulative fuckhead to women that you’re sleeping with.” are nothing more than lip-service that he spouts when it suits him. Yeah, remember that part about wanting to stick my head in the oven?

So anyways, both of us have known for weeks now that things between us should be over. On my end, things are done because he’s incredibly manipulative. On his end, I don’t fucking know. He says I don’t listen to him. On our Last Night Ever Getting Back Together, he just kept saying that–over and over, in between other shit about how I’m a liar and a hypocrite and a user–“You don’t listen to me.” Even though I’ve spent hours upon hours listening to his rants about how I’m actually awful. Even though he guilts me for doing the very things I should be doing– hanging up, kicking him out–I should’ve never listened.

Before he derailed every one of my concerns into being about how don’t listen to him, he made it about how I always give up too easy. He said I never have ever given him a chance, and that when I ended things (which, I tried to do on average once a week), I was just giving up again. During one of his worst railroad rants he told me I’m a quitter, among other things, for ten minutes straight. No exaggeration.

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All said, I’m sure you see the toxicity here.  Label it what you like–I’ve tried to compartmentalize it under “bullshit that seeps in to my soul, even though I’d rather never think about again ever,” but it’s tough. It’s tough because the first few paragraphs of this post still remain true.And those hooks, they’re deep.

Even though every fight somehow became about him and his pain, he’s the only guy who’s walked around the city with me, holding my hand. He’s the only one who gives me space to talk to strangers who assume I can’t talk, or talk to him first. The only one who said, “Fuck you,” to a passerby that said he was a “good man,” for holding my hand.

They’re are countless reasons why people put up with abuse. As a disabled woman, I think one of my reasons in this scenario was the way I simultaneously felt totally seen, and not seen at all. I felt a lot of love, and then I felt the rug slip from underneath me. I felt like people had no choice but to confront their ableism when we were out together, and that felt a bit like crack. I loved feeling like a real person.

Maybe one day I’ll feel it again, without a price.

 

This is what it feels like

I don’t know about you, but my last few months have consisted of men’s bullshit, and my minimization of said bullshit, as a means of survival.

But today, today I say fuck your bullshit.

Fuck the time you laid in my bed, right after I clarified that none of the hanky-panky would be had, stuck your fingers inside of me and said, “I want this.”

Not, “I want you” Not, “I’m attracted to you,” and definitely not, “I want your consent,” just this, and your stubby fingers in my beautiful vagina.

Fuck the night leading up to the morning of your intrusive fingers, when I said I was too tired to sleep with you, and you kept kissing me anyhow. Fuck the fact that I said at least 3 times that I was sleeping, and kept my eyes shut as you penetrated me with your penis regardless.

Fuck the fact that when you left the next morning, after your fingers had been inside of me and your penis had gone soft twice, (to which you blamed the speed crash you were having, and not the fact that you were trying to fuck someone who wouldn’t even open her eyes for you) the last thing you said was “You could’ve been more playful, you know.”

Fuck the likelihood that many of you will read this and wonder why I said “I’m tired” and “I’m asleep” over and over, instead of “No.”

Fuck the reality that I wonder that too.

Fuck the fact that you still text me.

Fuck the fact that you don’t know what you did wrong.

Fuck the knowledge that I’m a statistic.

Fuck the way that knowing you for a year changed nothing.

Fuck the way that all my wisdom on consent, and violence, and self-care couldn’t change a goddamn thing.

Fuck the perception that I’m vulnerable, as a disabled person,and its tangible, undeniable, non-socially-constructed truth.

Fuck the fact that after you’d left, all I could do was lay there, with my face in your pillow and your smell lingering, thinking about how it was bound to happen to me sometime.

Fuck the truth that so many girls have been here, and can’t read this without crying.

Fuck the fear that this won’t be the last time I experience this.

Fuck the fact that this isn’t even what I wanted to write about.

 

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.

 

 

 

#AbleismIs (Fuck Ableism)

#AbleismIs

What’s the best way to maintain inequality? Never name the fire that fuels it. The best way to hog power and control? Keep people in the dark about the ways they’re being mistreated; be it by individuals or institutions. Tell them it’s their fault. Redefine their reality. Tell them they’re losing they’re mind, that they did this to themselves, over and over until they take it for truth.

I’ve been asked to define ableism multiple times in the last few months. Each time, my stomach clenches with fear and retreat, as many different instances unfold themselves in my mind’s eye. I can’t. I think, almost instinctually. Putting the complexities of my daily life into tangible, understandable terms of oppression feels all-too-intense.

As intense as unacknowledged oppressions are, silence is worse. Silence is harmful. Silence manifests more ableism. I’m done with silence, and below is some of the ableism I experience. Add your experiences with ableism, so we can paint a fuller picture together, and hopefully dispel the power held by silence and ambiguity.

#AbleismIs a contradiction, a trap, that constantly invalidates people with disabilities and then tells them to get over their disabilities, be different, erase parts of themselves, look more ‘normal’

#AbleismIs the belief that disabilities are an excuse, born out of laziness or incompetency.

#Ableism says that disabled people are liars and/or criminals. Its baseline asserts that we could work but don’t, and if we are able to work, are scamming government funds and resources if we still have physical or monetary needs. #burdenofproof.

#Ableism locks disabled people up in institutions, presently, in many countries around the world. In Canada, the last known(abusive) institution was shut down in 2009.

#AbleismIs the assumption that everyone wants to be able-bodied,

#AbleismIs the belief that disabled people are less-than.

Systemically, #AbleismIs the structural oppression that legitimizes our poverty, unemployment, isolation, and general lack of well being. #Ableism justifies these inequalities by calling us inefficient, undeserving.

#Ableism glorifies our helpers as saints, while ignoring our names and stories.

#AbleismIs the reason why so many men still ask me if I can have sex.

#AbleismIs the reason those same men ask, “but how?”

#Ableism is this online dating text:

Screenshot 2015-11-10 16.54.55

Right. Because POF is where you find people to climb Mount Everest with.

#Ableism (internalized) tells me that I should not have other friends in wheelchairs, or with disabilities of any kind. It says that I’ve worked so hard to overcome my disability (eye roll), and thus shouldn’t have to associate with other PwDs.

#Ableism (internalized) whispers that I’m too good to date other PwD, because that’s all society expects of me and I better ‘do better’.

#Ableism (internalized) makes me a snob, isolates me from my own community.

#Ableism (internalized) makes me uncomfortable with disclosing my disability to those I’ll never see face-to-face, for fear they’ll start questioning my competency/legitimacy as a person, once discovering that I’m disabled.

#Ableism expects me to talk louder.

#Ableism wants me to learn in a standardized way.

#Ableism makes no time for mental health/sick days.

#AbleismIs the reason I didn’t know what ableism was until I was 24.

And maybe worst of all, #AbleismIs what’s made me think all these negatives are simply, “the cards I’ve been dealt.”

#AbleismIs never going to acknowledge that I was born with less spoons than ablebodied people, and #Ableism will never note that that does not make me less-than, but in fact gives me a greater filter against bullshit and time-wasting.

#AbleismIs the reason the rate of suicide for disabled people is estimated to be much higher than those of the “average” population.

#AbleismIs the reason those suicide stats are so well-hidden.

#AbleismIs the pity-smile from the passerbys at the grocery store.

#AbleismIs hiding my learning differences, because my physical differences are already too much to handle.

#Ableism causes closeted-living.

#Ableism teaches us that ablebodied people’s time is of more value than ours, that their lives matter more than ours, and that we should be grateful we are alive.

#AbleismIs ignoring or invalidating invisible disabilities.

#AbleismIs refusing to believe in the legitimacy of our disabilities.

#Ableism is, “You have brain damage? Well, you seem really smart.”

#AbleismIs the “R-word,” because when you use that word, you dissociate from the humanity of people with intellectual disabilities.

#Ableism says that I don’t understand how my body works.

#Ableism says my body is broken/deformed/tragic/something to gawk over.

#AbleismIs why I felt ugly as soon as I hit puberty.

#AbleismIs why I eventually decided “Fuck that, I’m pretty.”

#Ableism assumes that institutions know my priorities, and what’s best for me.

#AbleismIs responsible for the medicalization and dehumanization of my body.

#Ableism still regularly tells me I’m stupid, not good enough, and should just take what I can get out of life.

#Ableism hurts.

That’s all I have right now. My goal is to make a comprehensive list depicting what ableism looks like for all sorts of people, so contribute if you feel comfortable. Tell me, what does ableism mean to you?

Additions to #AbleismIs From Other PwD:

Jennifer Clayton says: “Ableism is…doctors telling me to find another doctor because they don’t treat people with “multiple problems.”

Ableism treats me like a dumb child, and is surprised I’ve had any accomplishments.

Ableism thinks I should be cured by now, or dead.

Ableism thinks I should apologize.

Ableism can suck it!”

Andrew Morrison-Gurza says: “#ableismis CP Warriors. Why are we fighting our disabilities and not embracing them? “
Point of reference:
 TIFFANY GRACE
Andrew also says: “‪#‎AbleismIS‬: Not knowing how to take things slow or create boundaries, because as PwD, we are rarely given the opportunity to experience consistency.”                                                                                                                                                                               Anne Killpack says: “#ableismis feeling like I have to be polite about not getting basic civil rights others get.

 #ableismis when a sign says dogs are welcome at the cafe that doesn’t let wheelchairs in.”

 Katie Calahan says: “[#ableismis ] When someone aggressively “insists” on “helping” me after I’ve politely refused their un-needed assistance several times! [#ableismis ]When my disabled friends tell me about the things they “can never have.” [Can-never-haves include],  “I’ll never get married” “I’ll never have a family” “I want to (career goal), but I’ll never be able to do that.”                                                                                                                                                                      
Odat Dbd says,: “[#ableismis ]the assumption that just because I don’t “look sick” I must be faking it. Naw man. I’m faking being well.”
Frank says:[#ableismis ] We are disabled not due to lack of our willpower, but, because society refuses to enable us. How can I compete fairly in a job market where 90% of the buildings where I COULD work, are not physically accessible to me?
Cheryl Green says: #AbleismIs the teacher complaining to me that it’s not fair I didn’t tell her I had a disability before enrolling in her class.
#AbleismIs The teachers telling me and the one other disabled student the accommodations they made for us without asking which ones we wanted or needed. And getting defensive when we told them the accommodations they chose for us felt unfair and awkward.
#AbleismIs asking me to wait for the whole rest of the class to get applause at the presentation, and then I can join them at the end.
#AbleismIs My mom reassuring me, “Well, at least you still have your intelligence” and not being able to explain what that meant when I asked her.
Send me your examples of ableism, at williamskristen519@ymail.com. Let me know if you’d like to remain anonymous.
                                                                                                                                                Recently, a group of black women with disabilities released a blog post called, “Black Women on Wheels: 6 Things You Need to Know,” The piece flies flat in the face of ableism, discusses the weight and shape of disability, and how it interacts with race and overall identity. It’s worth checking out if your looking for a little empowerment in light of all this ableism.

Here’s The Ableism We Disguise as Empowerment

stichhappy

In social justice circles, the phrase, “Take your power” is thrown around like a hot potato, encouraging people who have historically faced oppression to “speak up,” and “take their space.” Most of time, these sayings are meant to allow people ownership of space/time/rights that have been previously taken from them. While born of good intent, a closer look depicts a whole whack of ableism/problematic implications. Here’s why:

  1. It suggest that we’ve been denying our own agency & ability this whole time.Telling someone to take their power implies, oh-so-subtley, that we’ve been neglecting what’s been right in front of us all along. It implies that something about us needs to change, which goes against ideologies behind most social change movements.

It also assumes that power-taking is an option for everyone, which simply isn’t true. People who have experienced life times of trauma or abuse may not know how to take their power–or, might have no interest in doing so, as it is not how they have learned to navigate their lives. We need to allow room for these realities in all SJ movements.

2. It wrecks collectivity. As a kid, I had trouble speaking at an audible level.This meant that I just whispered everything, and most people never caught a damn word. I also didn’t use a wheelchair at school at first, so I frog-hopped everywhere. Combine the two circumstances and you’ll know what Kristen Age 4 was doing with her life: Crawling around Kindergarten class, whispering to kids, and hoping that someone would hear her. Soon enough, the other kids got tired of bending over to  listen, and everyone just started crawling, some whispering with me. No one thought anything of it, until one day we saw my mom standing in the door way of the classroom with what she called “happy-tears” in her eyes. Apparently something special had happened, and it made her cry.

That’s what collectivity looks like. It doesn’t necessarily mean shouting commands from the rooftops. It doesn’t mean taking space, or power. It means adapting, so that a person can be however they want.

Another thing: my whispering gave my excellent hearing, and my dad called me “Big-Little Ears,” for a little while. That wouldn’t have happened if I didn’t get to live in a much quieter world for a few years.

3. It re-triggers. You get why, yeah? It seems absurd sometimes to ask someone who has been dominated or oppressed to take power. In doing so, you’ve become yet another person telling them what to do and how to do it.  Especially in the realm of people with disabilities ( both physical and invisible), who have often gone through life feeling different, not good enough, not normal, and maybe out of control of their own circumstance. These feelings of difference and loss of control can very frequently be related to experiences of violence as well, so the very last thing they probably want to hear is how to act or behave in a more acceptable way.

4. It re-enforces dominance. And by proxy, that we take dominance as the most acceptable form of taking control, negating and excluding all the other ways to do so…..

Angry wheelie out.