Interdependence vs independence

As a gimp i've always strove for independence. i've needed to do that because i live in a society that says you're worthy so long as you can "take care of yourself". i've needed to do it because i grew up in a family that valued hard, often backbreaking work, over all else. Because that's just what you do. It's how you show your love, it's how you eat. And it's how you're rewarded and acknowledged as a worthy person.

And i've judged myself pretty harshly because of how i couldn't ever seem to really achieve "it", this independence, once i became disabled as a kid. This need had me doing things i had no right doing, working jobs that were literally breaking my back all over again. It had me denying what was going on in my body (piled on top of all the other denials i had been perfecting from a very young age), until i could deny it no longer. 

So much judgment, self flagellation and loathing had me wrapped so tightly i couldn't breath. I had known it, for a very long time. Somewhere deep in my bones i knew it, but i wouldn't speak it / acknowledge it, let alone change it; and i just continued my pattern of drinking till i passed out, raging and rambling, denying, skirting, covering up, cowering under. The same pattern i created when i came out as queer, as when i came out as trans. Over and over these patterns sewing themselves around me and those i loved, and me handing them the tools to do it. 

Around 2002 i got sober and began to unravel this binding. And this is what i found:

A broken, aching, hurting, sweet, survivor, fucked up, loving, abusive, unaccountable and contradictory human. A person who said they loved yet, despite the desire to, did little to change. i had been stuck, mired in my own shit and vomit and hurt, and i was going to bring anyone i could into it with me. There was no shortage of broken queers to choose from, and we sometimes fed off of each others' hurt like we'd not eaten in weeks. This was a terrible time.

And then i began to get sober and unravel all of it. There it was, exposed to the elements. No cover, no "yeah but"'s, and no numbing alcohol to make excuses for it or take it away. There were all kinds of things that contributed to me not taking care of my shit, and i certainly rolled around in all of them as much as i could so as not to face the truth of my choices.

One of the things i began to explore in this new sobriety were my issues around being disabled. In some ways i had to, because i could no longer bump up my pain meds with alcohol. There would be no numbing of the pain i was in, no tincture that made it possible for me to do things i otherwise couldn't do. i couldn't just pass out and not remember any of it. i could no longer continue on in the same denial i'd been in. i was hit right in the face with the long-existent reality of being a gimp in the middle of a major re-haul of my life, some serious self-loathing, and in the middle of understanding that i truly wanted and was prepared to do the work to change things.

And so i've been working on it, as they say. But wow there are so many things to look at, so many rocks to turn over, things to re-learn and remember. My life has been beautiful and incredibly challenging since beginning to uncover them. Good healthy loving relationships, sweet connections, honesty, vulnerability, change.

For the last many years i've been doing a lot of volunteering, including doing things like accessibility audits, workshops, writing, reading, that kind of thing, about ableism and accessibility. It's hard work sometimes, but so important too, and sometimes it feels like and is the only time anything changes, anything moves, anything gets DONE around this stuff in this town, and in the relatively small communities i'm part of. It feels like a necessity, and it so often is, in no small part because so few non-disabled folks are willing to do the work. 

But this funny thing happened in the process of going off and kind of doing my own thing: i have been, unawares, reinforcing the notion of this lone-wolf, which in turn reinforces the idea of the superiority of independence. And there's the rub, yeah? 

In my desire to escape some of the pain of not being independent as prescribed by this society and all my upbringing, i have bolstered the idea of independence, to my detriment. And woah, what a humbling and painful realization that is for me.

These days, very recently, while it's still a struggle to say, i'm working on claiming this as mine: Interdependence is where its at. That's where i'll find freedom, autonomy, resilience, accountability, love, joy. It's so hard. So hard to let go of my ideas about independence, even in the face of such overwhelming evidence that it is not serving me or anyone in my life. Denial, it's fucking powerful.

i'm a work in progress, and the only way i can work or progress is with others trying to do the same. Every time i read something by someone who talks about interdependence, i am lifted. Every time i work collaboratively, i let go of one more piece of control and one more piece of denial and isolation. 

i say it again and again, so i don't forget:

Interdependence is where its at. That's where i'll find freedom, autonomy, resilience, accountability, love, joy. 

<3

crafty!

here are a couple pics i've made over the years out of a photo i took of my crutches with their ice picks :) i hope they inspire you!

restrictions to service animals = restrictions to folks with disabilities, any way you cut it.

regarding this article in the wall street journal yesterday, a few things.

"Fearing a backlash, advocates for the disabled* last fall successfully lobbied the Department of Justice to narrow the definition of service animals. Beginning March 15, the Americans With Disabilities Act will only recognize dogs as service animals. The new regulations include a provision that says the public must accommodate, where reasonable, trained miniature horses as well. ...
The new rules are an effort to "stop erosion of the public's trust, which has resulted in reduced access for many individuals with disabilities who use trained service animals that adhere to high behavioral standards," according to a Justice Department spokeswoman."

Emphasis mine.

Well no surprise, i call bullshit. There are many reasons why people have service animals, and a wide range of species. i think it's a mistake to decide that because a few people who decide to use the current laws to their benefit (don't we all?), who are not disabled (according to whom exactly?), that because there are folks you think are "gaming the system", that what that should mean is an intensification of the restrictions. Who exactly do people think that affects the most? That's right, people with disabilities. 

It's already hard enough to deal with all the bureaucratic red tape bullshit of our various systems of support, without adding more. i don't blame people "gaming the system" for that. i blame a system which has some pretty fundamental flaws when it comes to disabled folks.

How does intensifying restrictions help PWD? How does it increase our collective understandings of the limitations of "disabilities"? How does it help folks not in a position to "prove" they are disabled? What sort of proof is expected? Are disabled folks expected to expose ourselves, our whole selves, in order to get on a fucking plane? That's rhetorical, because i know the answer: Yes we are. We always have been. How does this help?

* who are these "advocates" for "the disabled"? Why do they so often fight for further restrictions to the services PWD require?

i want to pee! and live! and so much more than that!

Disabled folks have some really diverse needs. i know i do! i'm interested in expanding the understanding of accessibilities, disabilities, accommodations, liberation.

i don't have big answers to any of the questions i find myself pondering around this stuff, and don't claim to have a full picture of what anyone else needs or where we should really start or go to with conversations about this stuff (or who "we" is anyways), but there are some real basic things i personally require to start the process of getting into a space. At its most basic, here are some (not all, just some) of my personal questions around my accessibility needs that i have to answer before i can attend something. Having to think about all of this, do all of this work before i can even consider going to an event is one of the reasons it rankles my kankles when people say "why don't YOU just call and find out it it is accessible?"

before i get in

• Is it on an accessible bus route? Does that bus run late? Is the location far from the bus? Is there parking outside in case i'm being driven? (i take the bus. i have a gimp pass, and its the only way i can regularly travel that isn't completely triggering to me--i was broken in a car crash, that's why i'm gimped. Sometimes i don't have a choice and have to go in a cab or someones car, i need to know if after that i'm going to have to hike somewhere)

• Are there stairs to get in? Are there rails? (It matters to me. It also matters to me if there are "a couple", "a few" or "wow i don't really know how many but some". Sometimes one is too many. 2 and 20 are not the same. Rails and no rails are not the same)

• Can i open the door by myself? Can i fit through the door? Is there a doorbell or do folks have to call on a cell, because i don't have one in canada where i live? (Can we pre-arrange a time where someone will be there to let folks in? Or are folks basically on their own?)

• Is smoking allowed outside (i'm allergic)? 

• and more

Once inside:

• Are there strong scents used to clean the space? Are people allowed to wear strong scents? (i'm allergic)

• Is everything i'll need on the same floor? (Once going through getting somewhere, the last thing i want to do is climb more stairs)

• Is there a variety of seating options? (Sometimes i need arms on chairs to help me get up, sometimes i cant use them because they're too tight and don't fit my belly or otherwise hurt my body)

• Is it a space where aggressive dudes are encouraged to be aggro? (i've got ish, ok?)

• Can i bring food / water with me? (i may not be able to eat or afford the food / drink there)

• Is there fluorescent lighting? (Major headaches)

• Is there loud music? (Can't converse)

• Is a workshop set up as a fishbowl style or open so i can see everyone who's talking? (i often lip read to get a fuller picture of what someones saying because i miss a lot aurally)

• Are there microphones being used? Does everyone actually use them or do they yell "can everybody hear me?!" and proceed to not use the mic? (i hate being the one person who needs you to use the mic, when i know it makes you uncomfortable to use it. When a mic is provided, people should assume its necessary for everyone)

• If i'm there with a lover who seems to "match" my gender presentation, will we be safe there?  Are people making assumptions and/ or attempting to use their "queerdar" and/or their "transdar" with me or us? Do people think they're being supportive when they do that? (i'm queer and trans and have a variety of sexual and intimate interests and connections. Will i feel and be safe there?)

• Are there spaces to go for more quiet so i can hear my friend? (Again, i cant hear well when there's a lot of noise. Doesn't even have to be super loud noise)

• Are people getting wasted and bumping into me and/or triggering me around alcohol? (i'm a recovering alcoholic, and it is hard to be in spaces where folks are drunk, so i like to know ahead of time; and drunk people have a tendency to run into me, and that shit is dangerous for me)

• Will folks bring food / drink to my table for me? (i use 2 crutches and cant carry stuff like that)

• Are people staring at me because of my crutches? (Happens all. the. time. But if i'm going to go out of my way to go to a space, i want to feel like i'm being treated with respect or at least indifference, rather than being gawked at and commented on-- which happens even in some of the most "progressive" spaces)

• Are the bathrooms gender neutral? How? Do people know what that means? (i am trans and genderqueer, and i need to pee)

• Are bathroom doors wide enough for me to fit? Are there grab bars in the stalls? Do the stall doors go in our out? Do i have to straddle the toilet to fit, then try to turn around with my crutches somehow? And what about all the other things that make a bathroom more accessible to me? (Being fat, even the size i am, and using 2 forearm crutches means that trying to use a bathroom whose door swings in usually means i have to basically straddle the toilet if i want to try closing the door behind me, then i have to try to turn around --all while supporting myself-- so i can pee. Is there a coat hook? A shelf? Is there a lock i can reach and use? etc etc

• Is there scent-free soap? (i'm allergic to most scented varieties)

• Is there reasonably priced food options? What price? Is there a "minimum purchase" in place? How much? (i'm broke a lot of the time. i can't afford to spend more than a few bucks out. i want to know ahead of time so i know whether i should just eat something at home, and whether my friends can come and won't be treated like shit because we can't pay a certain amount)

• Are people staring at my body? Does it feel safe? (see earlier)

• Are people just talking over each other all the time? Is there an understanding in the space about how that impacts folks with hearing/ cognitive disabilities?

• Is the fire escape accessible to me or obstructed by bins, ladders or other obstructions? (If shit goes down, i want to get out just as much as anyone else!)  

• Is the event/ organizing/ you name it, is it friendly to me? Do the folks involved know anything about ableism? Accessibility? Radical access? Are they trans, disabled, fatty, queer, sex worker friendly? Anti racist?  Etc etc etc!

These are some of the questions i ask myself about spaces and events and organizing i might want to frequent. About groups i may wish to be part of. About organizing i might like to contribute to in some way. Some folks don't have to consider any of this, some considerably more, some a mix depending on the day and time.It seems daunting. It is daunting to me sometimes. But there you go. 

What questions do you have to ask yourself about spaces you go to?

And if you think a space you own, work from or promote as such is accessible, ask yourself: what does that mean? 

<3

oh hey, also just a quick thing: if you reply to a post and include a link, i'm not likely to repost it is it has nothing to do with the topic or the purpose of my blog here. it ain't personal, just ya know, keepin' things tidyish!

<3

What Do You Do Once You Get In?

i feel like there's something pretty major i'm missing in my thinking around this, but here goes...

For me, it's the everydayness of being the gimp i am that propels me. The i-can't-put-this-aside-for-an-hour-ness of it. i've heard many other folks talking about that part of their own experiences, and can relate to some of it. i interact with the outside world almost every day, and every day i find physical barriers. That means something. And it means something that sighted folks see me as [their perception of] Disabledtm. And every day i push back against that, whether i want to or not, and dream about spaces & times when i'm not always pushing back. But sometimes, i get so wrapped up in the realities of just not being able to access some of these places/spaces/communities, been fighting so long to just get IN the door, that sometimes i don't know what to do once i get in.

Do you know what i mean? 

The problem is that, like some others, i view access in broader terms than just physical access to a space. That is key for me, and for many of us for whom physical access is key. i've had conversations with disabled folks for whom physical access is not their primary issue of access (for example, someone for whom stairs don't present a barrier), and i understand that. But for me, it's not just a nice idea, or "important". It's key. Literally and figuratively. The key to a door, a room, a space, a community, to freedom, to liberation.

As the years go by, i'm reconstructing my understanding of accessibility, disability, liberation. And that process has been challenging and heartbreaking and liberating in itself.

And one big piece of it i've yet to fully pry apart is this: 

what do i do once i get in?

• What does it mean when you've spent all this time working on the physical barriers to community, when some people actually start doing right by it and making their organizing and events accessible? 

• What does it mean to be so tired from pushing at the doors?

• How do we, as individuals and communities recover from the ongoing hurt of that? 

• How do we create not only physically accessible spaces, but liberatory ones for all disabled folks, while acknowledging the fucking imperative needs of each of us?

• Do the people who finally make their spaces/ events/ organizing physically accessible to me understand that it's so much more than that?

• How do i feel understood in a space it has taken sometimes a decade or more of pounding at the doors (literally and figuratively) to be able to enter? 

• What does it mean when i can enter but still many others cant?

• What does it mean to enter such a space that has been a site of so much resistance to the presence of disabled folks like me?

• Is this newly accessible space actually accessible? What does "physically accessible" mean anyways?What does "accessible" mean?

These are some of the questions that swirl around in my head while i go about my day. One of the great things is that, as disabled folks, we have so many different perspectives from which we come. There's so much for us to learn from each other. i wonder what i miss out on because i so often need to be really focused on the getting-in-the-door? and what i have to offer for the same reason? i wonder what your thoughts and experiences are with it? What do you do once you get in?

<3

Universal Subtitling

hi folks :) 

i want there to be more subtitles for film and video, not less. Subtitling is one way for more folks to access video & film. It certainly helps me understand things better, it makes it possible for others to participate in an otherwise *entirely* alienating & inaccessible event. And while subtitling is not the be-all end-all, but one piece of the puzzle, i think the bulk of us are looking towards greater inclusivity, wider community nets, empowerment, involvement, liberation, yes? Yes. And every bit helps.

A friend recently turned me on to this website called Universal Subtitles, where you can take pretty well any video and subtitle it in many languages. This is yet another fabulous tool for increasing accessibility and community!!

http://universalsubtitles.org/en/

Interview with Leroy Moore, Founder of Krip Hop Nation

http://www.kqed.org/arts/performance/article.jsp?essid=43903

Poet and activist Leroy Moore first put a spotlight on disabled hip hop artists in the early 2000s when he co-produced and co-hosted a three-part series on what he dubbed "Krip Hop" for KPFA's Pushing LimitsKrip Hop Nation MySpace page and a mailing list for disabled musicians around the world.

Changing the Framework: Disability Justice: How our communities can move beyond access to wholeness

"Our communities and movements must address the issue of access. There is no way around it. Accessibility is concrete resistance to the isolation of disabled people. Accessibility is nothing new, and we can work to understand access in a broad way, encompassing class, language, childcare, gender-neutral bathrooms as a start.

We must, however, move beyond access by itself. We cannot allow the liberation of disabled people to be boiled down to logistics. We must understand and practice an accessibility that moves us closer to justice, not just inclusion or diversity..."

By Mia Mingus

http://www.resistinc.org/newsletters/articles/changing-framework-disability-justice

Basically? Everything about this article is where im coming from with this stuff. Please read it.

<3

What Not To Do

It seems simple enough, 

but people really do stuff like this, 
like, a lot.

My advice?  
DON'T. DO. STUFF. LIKE. THIS!!!!

And here we are back at the beginning. 

Action Item 1: include access info. If you can get past that one item when organizing and promoting your events, and do it regularly, accurately, with intention? i just may well show up. Otherwise? It ain't happening. Ultimately, it's a numbers game, people: If you want more folks in your community to show up, make it possible for more folks in your community to show up.

Or at least be straight up about who is invited and who isn't. Honesty and intent ain't everything lol, but it can be a start. If i know that your intent is to invite more folks, i'm more likely to work with you on how i think we can make that happen. If, over the course of several claims of "but we intended...!", your event is not increasingly accessible, and there are negligible-to-no attempts to actually address it? Then no, i'm not going to attend and/or promote your event. Please, don't ask this gimp to promote actively nonaccessible events. 

But if i see that change is happening, i can totally work with that, add whatever time and resources i may have to help out, and be part of moving forward. But it takes working together on it, and the very first thing you can do is include the access info you now have. One step at a time, folks.

gimp DIY

Just made this sticker for my crutches :)

[IMAGE: a section of my silver aluminum forearm crutch. The vinyl sticker on it has a black background with large white courier font which reads "one less car." In the background is a pillow i made out of this fabulous multi-shade green circle fabric :)

An anti-government protester in a wheelchair is carried above the crowd during a demonstration in Tahrir Square, Cairo, Egypt, Friday, Feb. 4, 2011. The Egyptian military guarded thousands of protesters pouring into Cairo's main square on Friday in an attempt to drive out President Hosni Mubarak after a week and half of pro-democracy demonstrations. (AP photo)

[UPDATE: never figured out what happened, but i think ive gotten most of it back, though i know there are gaps. i just cant remember some stuff! if theres something you think i should check out, drop me a line here!]

In slightly less freaked out mode lol, my blogroll has disappeared. Don' t know what's up with that, but i'm pissed! It took ages to find all that great stuff :( Sigh. Anyways, i'm going to try to work it out.

Back to regularly scheduled shit disturbing...

Anti-Bullying Website

Hey, please check out this new website about bullying and folks with disabilities. They're looking for submissions by March 15, but i imagine it'll be an ongoing project. More of this kind of thing! 

Over the years i've experienced a wide range of what i consider bullying as a gimp, and let me tell you, it runs from the hilarious to surreal to really fricken scary. Anything from comments about how it (my disability) is "just so sad!" and "just such a waste!", to "when i see you, i feel so fortunate!" and "you're really inspirational!", to "you're a useless piece of shit" and being shoved and hit and otherwise physically intimidated and messed with. This shit is real, it does serious damage to folks, and the more resources that're available to help folks deal with it and/or to expose/deal with their bullying ways the better!

On Alternatives When Disagreeable Bodies Need to Cancel Plans

One thing about being the kind of gimp i am, is that i need to plan in advance and sometimes have to cancel plans. It sucks, all around. i've spent time figuring out how to deal with the reality of that, including how it impacts others. 

My main goals are: to not harsh myself out with guilt or shame or embarrassment, and to remember that it's disappointing for other folks too. But how to do that, to balance that, in a world that constantly says you've got to be able to "gogogo!"?

It's a dilemma!

i go through frustration and other feelings around this to varying degrees, and until more recently, had a lot of angst about it. i don't want to disappoint, but don't want to injure myself, don't want to slowly lose the connection to friends and community that grows the more you hang out. Would folks eventually just stop making plans with me? Would everyone double-book, just in case?

i understand that it can be disappointing and frustrating to make plans that sometimes (or often) don't materialize, and so i want to bear that in mind, and be sensitive to that. i also recognize that my body does what it does, and when it's telling me to slow down, if i don't listen i can be in serious trouble. Like the kind of trouble where i can't get out of bed. As someone who is often able to get out of bed, that shit can be really scary. The kind of trouble where my pain level is so beyond management. The kind that makes it so i can't hang with anyone, let alone go out and sit in a cafe or do crafts or shake my ass.

Part of what has helped me chill out about it is that so many of my friends are also gimps, in hugely various ways, or have other chronic health stuff going on. There have been times i've felt frustration about the ongoing canceled plans, for sure. i needed to acknowledge that to myself, and then check it. 

Maybe some tips?
If you have a friend who cancels plans because of disability stuff, it's ok to be frustrated or sad about that, definitely. i think it's important to be able to talk about it with each other. But there's a real fine line between sharing your feelings and dumping them. As folks with disabilities, we sometimes deal with incredibly disagreeable bodies, bodies that can make us frustrated and pissed off too.The last thing we need is more shame and guilt about that. i'd prefer folks not beat around the bush with me, but be honest about feeling disappointed, and then work together to find alternatives (which is not the same as offering "helpful advice" about how i should be dealing with my body, in case that's not clear!). 

One example: a friend and i had planned a dinner together at her house. On the day, i knew i wouldn't be able to get up her stairs and thought we'd have to reschedule. But instead, she suggested and i agreed to made up a picnic basket and have dinner in the park :) It was such a simple thing, but meant a lot to me, because she worked with me and my body in a way that didn't make it all about what my body couldn't do. She found a way to help us accommodate my needs, while keeping our plans. And it turned out to be heaps of fun :) 


If folks are open to it, come up with other possibilities. There are so many ways to work with the bodies we've got. On days i can't move much, the reality is i'm not really up for many adventures. It means i'm dealing with a heightened level of pain and probably also agitation. Company ain't always the best idea lol. But sometimes it really is the best thing. Work together to figure out what's going to work for your particular situation, and i really believe that frustration, disappointment and loss of a sense of community can decrease, and new adventures can be had for everyone involved.


xox