Help Create a Crisis Line for PwD, by PwD

 

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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.

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Here’s The Ableism We Disguise as Empowerment

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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.

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.

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  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.

Rachel Dolezal Take-Aways

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Let’s be blunt: The Rachel Dolezal situation confused almost everyone.Questions around privilege, deceit, trans-race, and victimization began popping up everywhere, and many queries still go unanswered. Though the conversations around Rachel’s “true” identity and motives are far from over, I have a few take-aways:

1. Trans identities go beyond gender. Duh, right? Some people are born feeling like they’re in the wrong bodies when it comes to gender. Some feel like they should be disabled, but have been born with full physical abilities. Some people simply identify more strongly with something that doesn’t align with their reality. In the words of Laverne Cox’s character from OITNB “Me and reality haven’t really gotten along.” And…So? In the words of my little sister, “Kids should be able to feel however they want to feel.”

2. The outcry against Rachel Dolezal is mostly due to her deceit. Maybe it’s still unrealized, but people seem to be more upset about the fact that Rachel lied about her heritage than the fact that she identifies as black. “Passing” as black is seen as manipulative.

3. In a more trans-comfy society, maybe such deceits wouldn’t happen. On the whole, we’re still not OK with people who claim to deal with oppressions because of their trans identities. Those of us that are born into a certain minority feel a sort of possession over the issues we face, and sometimes feel like those who identify with– but were not born into the marginalized group to which we belong– are stomping all over our sweat and tears and stealing our resources/culture.

It is this sense of ownership that might add to someone’s motive to lie about their roots. If we were more accepting of how people identify, and less focused on the burden of proof  and possession of our own spaces, maybe things like being trans-racial wouldn’t show up as these big, bomb-shell surprises. Possession and ownership in the right doses can empower, but in the wrong doses–those that ask for legitimacy and proof–can exclude.

4. Oppression Olympics happen, especially in activism. Sometimes, layers of oppression can serve as currency in social justice circles, giving us clout–and many times, rightfully so. The more oppressions you deal with, the more people you can relate to, and the deeper the understanding you can bring to your work. The downside to this is that sometimes people start to compete for their “right to fight in the fight,” and lose sight of the collective goal.

Short from being in Dolezal’s head, we can’t really say whether or not Rachel purposely used her ability to pass as black to gain power within her field of work, or if she wanted to be black so badly that she didn’t dare admit to being born white–or both. Maybe in a few days they’ll be an explanation, but regardless, I think we need to at least talk about the ways in which oppression olympics contribute to issues like Rachel’s.

5. Rachel’s lies are not “the norm” for women. Articles have been showing up about the extent of Dolezal’s lies. This makes me heed a warning to the internet: Rachel’s story is not typical.

Some news stories are framing her situation as another case of a woman who lied and exaggerated (re: victimization) for personal gain, and I’ve seen many comments that enforce the distrust of women, based on Rachel’s deceit. What I’m saying is, our society has a general distrust of women, a default to see them as dishonest and cunning and batshit crazy. I caution against this–especially against using Rachel’s story as backing for this belief. Rachel lied, probably a lot, as she claimed to be black for (at least?) 6 yrs straight–but her lying does not prove or enforce anything about the truthiness of women generally. Be mindful of that trope when you’re guilty-pleasure reading more details on her case later.

Please Stop Talking About That #Qdoba Restaurant

You’ve seen it; the viral video that shows a Qdoba restaurant fast food employee helping a PwD eat their meal.In case you live in a blissful world where people don’t have social media, here it is:

This video has been trending on-and-off on Twitter and Facebook since this afternoon, and it’s annoying, because the rhetoric around it is all wrong.

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News reporters and common folk alike are calling this happening an “act of kindness” and the uploader of the video said the instance was proof “that there are still good people out there.”

I will be that person, to state that this is a very well-accepted form of exploitation of PwD. Many ablebodies are watching the video with butterflies in their stomachs, wiping stray tears from their eyes, as their hearts grow three sizes.

Stop the madness. Wipe your tear. Think about the facts:

– A disabled woman needed to eat.

-This woman made an order at a restaurant.

– She then asked for help eating.

– The guy decided he could assist her, put on gloves, and she ate.

That’s it. Sorry to bore you. Nothing to see here.

As I’ve been the girl to both need help and give others help with eating, I can tell you that it’s nothing to fuss over. As someone who can usually eat without assistance, I can tell you that it sucks when circumstance demands that I need help with it. You know what makes it worse? MAKING A BIG DEAL ABOUT IT, at the expense of my dignity.

Please stop reiterating our over-glorification of human kindness, at the expense of others. It’s  oppressive to those needing help.

Goodnight.

A Letter to Survivors of Sexual Assault

In honour of Sexual Assault Awareness Month, here’s a letter to those that have experienced sexual assault. It is all the things I wish I could say to you over a hot cup of coffee in a quiet, undiscovered (but somehow accessible?) coffee shop.

I believe you. Every last word. You are not “crazy.” What happened to you is.

It’s not your fault Ever. If you’re a survivor of multiple assaults, not one of them has been your fault. I’m sorry that this has happened to you, no one deserves to go through that, and nothing you did could warrant sexual violence.

You are strong. So fucking strong. Even if you don’t feel strong. The fact that you are reading this, (er uh, sharing with me over fake coffee) makes you strong. Being sexually violated can be devastating, and completely debilitating. Just living through it makes you strong by default.

Your healing process is 100% yours. There is no proper timeframe for recovering from abuse. There is no limit to grief. If you are having trouble doing the things you used to do–are feeling depressed, angry, unfocused, cloudy, confused or indifferent, know that you are healing. You are refuelling. You are resilient–you’re a fucking butterfly-in-the-making, cocooning from violence, preparing to come out beautiful when ready. You will heal as you know best–how you do that (and who you allow to be part of your healing) is entirely up to you. My guess is that any way you do it, you’re doing what you need to to get by.

Flashbacks and anxiety are common. This is a frequent reality for people that have experienced violence. It’s your mind and body’s way of processing your assault(s), of helping you cope. You are not alone, many survivors have flashbacks, anxiety, and/or night-terrors related to their assault. Some techniques that might help you through these feelings include grounding, breathing exercises and calling a crisis line for support.

*This upcoming point is about power-and-control dynamics as they relate to violence. Some people who have experienced violence might find this overwhelming. If so, scroll down a point.*

Sexual assault isn’t about sex, it’s about power. You might feel confused about what’s happened–especially if you’ve been assaulted by a family member, boyfriend (or girlfriend) or spouse. And rightfully so–why would someone who loves you force themselves on you? Were they just extremely horny?

There is a prevalent belief that sexual assault is one person being sexually aroused by another person and then forcing themselves on that person. This is inaccurate: One person is sexually aroused by power, and  then forces themselves on that person. Ergo, the person that has been assaulted has nothing to do with the assault,because it was not about them, or their sex appeal, it was about the assaulter’s plight for power.

So, your partner, or family member that has sexually assaulted you did not do so because it is how they express love. They did not do so because you were “looking all beautiful and batted your eyes” at them, or because they just “lost control” because they were so turned on. In fact the opposite is true: They did so because they found a way to gain control over you.  This is not your fault. You did nothing to deserve this, nor are you the reason it happened. It happened because that person decided to force themselves on you, because they wanted power.

If you want it, there is support for people that have experienced violence Everyone deals with trauma differently, so you are the best judge of whether or not you want (or are ready/ in a safe enough place for) support.Support comes in different forms, from online forums or phone conversations, to individual counselling, advocacy, or group sessions. I’m in the Ottawa area, so all of my resources are specific to this region, but if you are ready, you can reach out, wherever you are. Calling your local community centre and specifying the type of help you want is a great place to start.  If that seems overwhelming, you can try to put down what you’ve experienced on paper, or record yourself if that’s easier, or make art.

If you feel like talking, here’s a list of crisis lines in Ottawa: https://carleton.ca/health/emergencies-and-crisis/emergency-numbers/ ( and here is a list if you prefer to speak in French, or other languages).

And lastly, I wish you kindness and positive people in your journey of healing. I wish you hope. I wish you well-being. That’s what you deserve. ❤

Wheelie Wannabies & The Basics of Body Integrity Identity Disorder

In high-school, I had this really confusing dream that I was pregnant. Somewhat strangely, the dream didn’t focus on who the father was or how I would raise the kid, but rather the fact that I was (miraculously) pregnant, and the fact that I now walked. I woke up sweating, going over the images in my mind. In the dream, I looked down at my belly: I was wearing a green shirt, had a lovely baby belly, and was standing in the sand. I felt wonderful and free, but everyone in the dream kept asking me: “How did this happen?”. The reoccurring question got louder and more frequent, and I became anxious, not knowing whether the question referred to my walking or the thing growing inside of me.

It was the first dream that I remember (vividly) where walking was acknowledged as being different from my everyday reality. Up until then, I walked in all my dreams, without the underlying feeling that it was suspicious or wrong. It’s how I saw myself, and it made sense.

It’s in the inverse way that I’ve come to understand Body Integrity Identity Disorder (BIID), a label describing when people have a desire to be physically disabled, when in reality they are not. In the interest of better understanding all kinds of people, and putting aside misconstrued beliefs about people with BIID, I invite you to read on.

What is BIID?

BIID is a disorder in which people (most commonly) want to have amputation or paralysis, usually of their lower limbs. It most often manifests as a desire to amputate the lower left leg below the knee.Its frequency is largely unknown, as a lot of people with BIID are ashamed or even baffled by by their desires(and the stigma attached), and the disorder is rarely studied.

Why Does BIID Happen?

Within the small pool of lit that exists on BIID, it’s sometimes called a mental illness, though majority of research suggests that it is a “body mapping” disorder. The body mapping theory claims  that the part of the brain that “maps out” body movement (specifically the right Parietal Lobe) is likely malfunctioning in someone with BIID. For example, in this sensationalized videoclip, the BIID person undergoes a brain scan which shows no evidence of the effected limb existing on his brain-map. As a result of this disconnect, people with BIID often feel like their unwanted body parts are foreign objects, alien to themselves and their identity.

Take a moment and envision what this must be like. To look down, and see a body part that doesn’t connect with who you are. The closest (and probably most pathetic) link I can make for us non-BIIDs is that feeling of chilling-fear you get when your hand has fallen into a numb pins-and-needles sleep and it feels so dead that for a minute you can’t move it. It just lays there, useless, and your only thought is “it’s like this isn’t even my hand.”…

Someone who identifies as having BIID was willing to chat with me, and agreed with a link I drew between Phantom Limb Syndrome and BIID. PLS is a much more commonly understood syndrome, in which people physically mourn the loss of limbs. I stayed in a hospital with a bunch of post-op amputees when I was 19, and almost all of them would complain about pain in their legs and feet–the legs and feet which had been taken from them, for whatever reason. The two syndromes are comparable in that they both display symptoms which do not allign with reality; one feels the pain of a limb lost, while the other grieves its existence.

If for no other reason, I believe BIID should be discussed simply because of how emotionally taxing it is on those it effects, as well as their friends and family.I have read post upon post of people discussing the emotional toll this incongruency takes on them, and have heard stories of people self-mutilating/amputating, freezing (as is seen in the above clip) and even shooting themselves in the foot to make their body match their perception.And this isn’t the half of it–there are medical costs and soiled relationships and accessibility issues to contend with, on top of having to prove the legitimacy of your desires to everyone you know. It’s high time we stopped challenging BIID suffers and started listening.

The Social Side of BIID:

When I first started asking questions about BIID, I wondered if there was a link between helplessness, or wanting to be babied, or a desire to be dependent on others. What I found was a pretty hard, “No.” People with this circumstance do not generally crave the social atmosphere that inevitably accompanies disability–many admit that this is one of the most difficult things to deal with, when thinking about becoming disabled. But it isn’t about envying how disabled people are treated. It’s usually not about wanting the wheelchair. It’s about ridding oneself of parts they feel don’t belong.

My main hope is that everyone can stop being afraid of what we don’t understand. Frankly, there’s nothing to fear–If the manual for your body doesn’t tell you that you have lower extremities, it’s only logical that you want them gone, just as it’s logical for me and my fully functioning body map to want the able bodiedness I see as normal. BIID has nothing to do with disability, and everything to do with matching one’s body with the way they see themselves.

As always, there is more to discuss here, like the terminology used to describe people with BIID, the links (some exist, but not always, and not formally) between BIID and Devoteeism, and the general ethical issues which further stigmatize many with BIID–but I’m out of space. Next time, perhaps.