Representation, again.

19 Jun

Recognizing that most often there is no representation at all (and therefore, i guess, we should be happy anyone is even thinking about it?), visual representations of those of us who do have visible / perceptible / etc physical disabilities (and, ideally, representations which don’t pander to ableist niceties and notions of what it is to be physically disabled in this particular way, but let’s not get carried away) are necessary, they are important, they matter; and to me they do not and cannot take the place of representing all disabled folks. When certain stereotypical images* are used to represent “all disabilities” -to the inevitable exclusion of the outrageous diversity across disability- they do a disservice to all of us, and they do ableism’s dirty work for it. No thanks.

And yet, i still return to my reality that images of those of us who have visible / perceptible / etc physical disabilities (in addition to whatever else we got goin’ on) matter. As a sighted person, it matters to me when i don’t see anything like that, and it matters when i do. Yes, i do take note of a lack of assistive devices, canes, wheels, braces, amplifiers, bandages, oxygen tanks, plugs, bags assistants, etc., and variously bent / broken disabled bodies represented in a project. Not because i believe that that’s somehow the only way to assess the kind of disability “inclusion/ exclusion” that’s happening in any given project or community (it’s not), or because i think that disability looks one specific way (it doesn’t). i take note because it matters to me to see some however tiny piece of my experience reflected, the piece that “just happens to be” the most blatantly obvious thing about me specifically about certain disability experiences. That means something.

i tire of people saying when they are asked about there being no visual representation of certain kinds of disability (particularly when they are assessing other kinds of inclusion/exclusion via specifically visual cues) “well, you can’t tell who is disabled or not just by looking!”  In a similar way i tire when people who don’t seem to want to make a ramp materialize for their event say things like “Well access isn’t only about ramps you know!!” – as though it wasn’t fricken hugely variant disability justice communities that came up with that fancyass idea in the first place.

When there are no people with assistive devices or anything about our disabled bodies that is clearly, blatantly, pretty unceasingly marked  as disabled anywhere in a project, that actually MEANS something. To me, it doesn’t mean EVERYthing, but it sure as fuck means SOMEthing. i’d like to be able to talk about that very real experience of exclusion/inclusion without being told i must therefore think disability looks one way. If you know anything about me in relation to disabilities and access and ableism, you know this.

[*and im not actually talking about the international accessibility icon. that's another conversation]

Disability =/= An Inability To Handle The Tough Stuff

15 Apr

In addition to not being “unfortunate” because i’m variously disabled, i’m also not incapable of fucking things up, of taking critiques, of being called out, of existing in an uncomfortable place. Disabled adults are so often seen and treated the way some people treat children -ways i think are not ok to treat children either, disabled or not:

- as though we have no sense of right and wrong or nuance;
- as though we can’t handle the truth;
- as though we can’t learn;
- as though we’re such sensitive breakable delicate and hideous creatures that it’s too hard to be real with us;
- as though if you crouch down to our level and speak slowly or pat us on the head (literally or figuratively) or make your statements “simpler”, that that’s our comfort zone. For some disabled folks, that works for them. We’re so different! Imagine that! But the *automatic assumption* is so often that we can’t handle information, can’t have someone be pissed off at us, and can’t be held responsible for our actions, our privileges, and our words.

This is — just to be clear — bullshit.

i promise that as a variously disabled person can and do handle it. i can have conversations that are hard; can look at or be shown or be called out on how i may be enacting shitty behaviour; can have conversations about how i may be taking up space; about how my white and other privileges definitely impact how i move this disabled body through the world; i can be held accountable for my bullshit, and i won’t, actually, be broken by it. And if i feel broken by it, well i can handle that too.

It’s not ableist to call disabled folks on our shit. It’s ableist not to (i don’t mean if someone doesn’t call me out that that’s ableist; i mean that it’s ableist if someone doesn’t call me out specifically because of their ideas about how disabled people apparently can or cant handle that shit).

i’ve never shied away from difficult conversations, fierce resistance, unpleasant embarrassing realizations/realities, or personal examination in a broader context. If other things stop you, i totally respect that, but please don’t allow your fear of being seen as ableist to stop you from doing that with me. If you’re not disabled, you benefit from ableism, and that reality comes into any conversation we may have whether it’s hard stuff or not, that dynamic is there, it’s a real thing, as are any of the other dynamics we may have going on. i bring my whiteness into any space i go, my dude presentation, my non sex working, settler/colonizer self, my document-having realities, my smaller fatty reality, my english language, all of it and so much more than that. You being non-disabled and me being disabled (or you and i being differently disabled) means something, but it doesn’t make conversation or accountability or honesty or movement or much else impossible. Living as a disabled person, i’ve learned to handle a lot of shit. Believe me, i can take it. So let’s get on with it.

 

 

 

 

briefly on meds and death and the state

7 Apr

This is a basic reality for me, not a statement about what anyone else “should” do or think about it:

If i don’t take medications, i die. It’s that basic for me. No, there is no alternative to what i take. No there is nothing else that i have tried or that i have heard of (which is, just to be clear, a hell of a lot) that will work for my combination of stuff. No, i’m not interested in being told about cures (there isn’t one, by the way), no salves, balms, soups, super veggies, drops, meditations, magic or anything else that may very well have worked for you. For other things i deal with, if i don’t take medications i lose small and huge chunks of myself. Medications keep me alive, they help me stay present, they allow me to be here, flawed creature that i am.

i have huge philosophical and political problems with that, for sure. As i have a problem with the fact that i have to rely on a state which i despise with literally every fibre of my being for basic subsistence, including these medications. But such is life in a fucked up capitalist system. And despite at one point in my life deciding that if the destruction of the state that i dream of actually happened, it would most likely mean -at least in the initial stages- that people like me will die off quicker than some others and that that is just the way it is (as many folks decide about “other” people right now, in “other” places right now), i’m actually not ok with being left behind because of my body, not ok with any of us being left behind because of our bodies and the circumstances in which we find ourselves. Not in some future state-free, oppression-free existence, and not now. The one thing i, you, we have any measure of control over is now. So don’t leave us the fuck out. Build a culture where variously disabled folks are not left behind. Build capacity to support one another. This shit is basic as death. Like, literally.

Good enough aint enough. Let’s get it right.

3 Apr

i want communities to strive for better when thinking about how to label their venues wheelchair access wise (accessibility of course being so much more than that, but this is one of the features i directly deal with).

 

For example, there are a number of venues here in town which continue to be labeled “wheelchair accessible” and “fully wheelchair accessible”, even though (for example) a stage –realistically the central feature and focus of a space– is utterly not accessible. Why is this? i believe that the ways communities label the spaces it uses matters in the day to day lives of gimps, which is why i get excited about getting it right.

 

A venue can certainly be accessible on many fronts, but some parts of it continue to not be. For the City, sometimes that’s good enough, and codes/laws/etc differ from place to place. But for me, i’m not relying on the State’s definition of “good enough”, and unless the facilities used by all of us in the space are wc accessible, they don’t work, they don’t include me, and they don’t look far enough outside of old boxes… are simply not good enough.

 

If you’re having an event which uses a stage, don’t you also wish to include those of us who’d need wc access to it? If you see us at all, do you see us only as attendees putting money down or volunteering at the door or filling the audience with fabulousness, and not as directly contributing to the content? Is that truly good enough or is that just bottom of the bare bones barrel? Because i know a lot of gimps, and we have some seriously brilliant stuff to offer, brilliant stuff that we’re sometimes already sharing elsewhere with folks who already have it down, but often we’re stuck with no place to share it at all.

 

So if you are among those who really do want to increase access, and break down some of the ableist barriers (architectural, attitudinal, social, etc) tossed up all around us, i ask you in part to regularly question your listing of a space as “fully wheelchair accessible” for your events when it very clearly is not. Ask yourself, honestly, the questions above and these ones too: What is the focus of this space? Where is everyone focusing their energy/ attention/ adulation? Where is the power/ influence/ etc in this space? Is that space accessible? Why is the venue being listed as accessible when a primary feature of it is not accessible? What benefit is there to doing that? Who is being missed in this labeling? What opportunities are being missed by performers and audience members and organizers alike? What explicit message are you sending to potential participants by using that venue? What is the community you want to build? What can we do to change the situation?

 

Really, ask these questions, and more, and i think you’ll be surprised at what you come up with.

Wibbly wobbly bus timey wimey

3 Feb

See, this is the thing. If you’re fortunate enough to live in a city which has wheelchair accessible transit, and you’re sitting there and you notice people in scooters / wheelchairs trying to get on and off the bus, this is the reality:

You saying things like “THIS is why the bus is always late!!” and “oh for fuck sake!” and “why are you on the bus anyways?” and “i don’t have time for this!” and so on, actually makes things go SLOWER than they would if you had shut your trap and let people do what we need to do.

i know, it’s kind of wild, but stick with me on this, OK?

Some of us make it look easy, but it is actually really hard to negotiate the very small spaces we are allotted on buses. Some of us actually go to the bus depot to get trained on how to get on and off all the various kinds of transit in the city, and even then, it’s still hard. Some of us gimps have less mobility than others, perhaps less arm strength, less ability to turn our torsos to check over our shoulders etc; some of our wheels have a wider turning radius; some have crappy or busted tillers that don’t turn well; and any number of other mechanical/structural/physical things which can make this process more difficult.

Generally speaking, when we are doing this, we are on total display. Do you have an understanding of how stressful that is? To be a disabled person on wheels is to ALREADY be on massive display, all the time, to be scrutinized and gawked at. When you add trying to get on/off a bus to that, with everyone facing you, staring at you, making complaints about you, huffing and puffing and sighing and whinging about you and your inconvenient body, it makes it exponentially more difficult to do. 

Why? Because when people do this (and worse) to me, out of nervousness/ shame/ anxiety/ social pressure/ fatigue/ whatever, i am more likely to mis-judge the space, more likely to crash into shit, more likely to have to back in and out more, more likely to get my crutches and bags and whatever else snagged on things. All of which means more time waiting for you. Do you like it when someone is watching your every move? Hovering over you (sometimes literally), making shitty comments about you, your ability, your body? How about a bus full of people? Does that usually make things take longer or does it make things easy as pie?

Exactly.

So the next time you see me or someone else getting on or off the bus/train/whatever, have some fucking patience, read your book, do not stare, do not provide running commentary. Before you know it, we’ll be underway, and you will have just treated me like any other human being. Imagine that!

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equality meh…

15 Jan

Treating people exactly the same is not equality. Or maybe it is, but i don’t want equality. i want liberation. And one of the things that means to me is recognizing different situations, different needs, and that you can’t simply treat people “the same” (whatever THAT means, when we’re actually NOT the same) and have outcomes which those people might describe as liberatory or just or fair.

 

For example, if you expect that i should be able to do something in the same time as someone who is not disabled, you’re not getting it. And having a different set up for me is not, like, special treatment or something. It is simply recognizing that my abilities and limitations are different, and rolling with those instead of trying to push me into a box i will never be able to fit in (believe me, it’s really awkward). My idea of a good mode of or reasonable amount of time in which to complete something, may be different than yours, and so long as it’s not completely putting you out in some fucked up hurtful way (which, y’know, we could talk about), maybe you can just roll with that too?

 

This relates in many ways to the post i wrote about how when you “welcome” disabled folks, you also need to recognize that things will possibly change, may be different than they were before you “welcomed” that person. This stuff works the same and maybe takes it another step.

 

If you welcome me, welcome all of me (including the bits that make you uncomfortable, or change the status quo), and i promise to not whinge about the bizarro able bodied way you do things.

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PSA: When You Actually Welcome Us, Shit’s Gonna Change.

6 Jan

So there’s this thing that happens when people are friends with or work/volunteer in some capacity with variously disabled folks. Something about how, even with the introduction of a totally new experience, things are supposed to stay precisely as they have before that person came along.

i’ve experience this many times, this sense of being in the way / messing things up / “changing the vibe” simply by being myself, physically disabled, in the specific and general ways i am disabled, even though people have invited me into a space / said that a space welcomes me.

Let’s say you work in a bustling office. Up until my wheeled arrival in the space, people ran around wildly with packages and boxes, files and coffees. Because i’m on wheels, i gotta watch out more than usual (because holy shit do ENabled people ever get pissy when you run into them or get in their way!), and so do the people on foot. Some of them are fine with a slightly slower pace, but others balk at the change. It’s simply unacceptable for them to have to both welcome me as a disabled worker, and also do anything beyond that that may have even the slightest impact on how they exist in the space. Why should they have to change anything when it was all going so well / timely before?

Or let’s say you put on a film night. Where before you had little awareness of folks on wheels or requiring other accommodations, and just laid the space out however you felt like it; now, you are being more thoughtful about the layout because you want folks using various wheeled mobility devices to be comfortable, not separated off from others, and also have a clear bathroom and fire escape route for everyone. So some changes to seating arrangements need to be made, but it’s nothing you cant brainstorm. Some folks dislike the “vibe” of the new set-up, or don’t like that they can’t sit on the floor anywhere they please, and so on. Why should they be put out because i want to be in the space too?

Or take bike lanes for example. i use the bike lanes in my mobility scooter. While most folks seem to be ok or at least indifferent to it, there are those who have yelled at me for it. They don’t think i should be there, they don’t think anyone but bicyclists should be there; or they are open to the idea but not the reality of having disability scooters etc on the paths -which usually means there will be someone going much slower than a bicyclist. It certainly must be very inconvenient to have to swerve around us!

These are just a few minor examples, others run from the mundane to the ridiculous, and i’ve pretty much experienced the gamut.

It’s one thing to invite a disabled person into your life, your building, your workplace, your home, your event, your bed; and it’s another thing to actually welcome us. When you welcome us, you welcome all of the things that go along with “us” – including things which may be inconvenient for you, may be different than what you’re used to; it may mean something that took 20 minutes before now takes 25, or 40; or may mean you need to choose a different path to get through a space; it may simply mean adapting a very simple change to your schedule.

If you can’t deal with the fact that it takes me longer to do something than it takes you to do something, you are actually not welcoming me. If you insist on your timeline being the One True Timeline Against Which Time & Meaning Itself Must Be Judged, you are actually not welcoming me. If you think the layout of your event can remain the same as it was before anyone in a chair accessed it, you’re actually not welcoming me. When you prioritize your need to avoid even the slightest tiniest inconvenience at my expense, you’re actually not welcoming me. You are paying (however well intended) lip service to inclusion, which is no inclusion i want to be part of.

Often, people like the idea of “inclusion” if folks with disabilities, they really do from the heart, but don’t understand that it may very well mean a change is needed, and that we usually have a great deal of experience compromising and changing our own schedules and habits to suit your able bodied world. It would be nice if able bodied folks more often took the time and effort to recognize that when you invite us, you will need to do some adjusting, that things will simply not be as they have always been. That’s just the way things go. And you never know, you may even like the change!

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