Hi Haley! This is Zavi from pz I came across your tumblr from Chris' and I love it! But I know sometimes ppl feel weird about ppl from real life/school following their tumblrs so I thought I would ask before following--i won't be offended either way! — Asked by zavmonster

Hi of COURSE you can follow! Sorry to be getting back to you so late - I was using an iPod instead of a computer for the past few months so I haven’t been much on tumblr. 

part-time wheelin’

hey there internet!

If I could please get your brainstorming assistance, I would be forever grateful and will repay you in illustrations of the brainstormed contributions. I need help with:

+ clever responses (ranging in sassiness) to people’s shock/surprise/discomfort/confusion when I get out of my wheelchair

Feel free to pass this along - I know there are lots of you sassy clever part-time wheelers out there on tumblr…

i have no idea if this will interest anyone on tumblr but I figured I might as well give it a go!  
[image description: a hand-written letter with a cut-out dorky photo of myself waving at the camera and also a small photo of my wheelchair and backpacking pack collaged on. the text reads: 
 HELLO friends of friends and potential future buddies! 
I’m haley, enthusiastic improvising adventurer who is fortunate enough to be traveling the world this year on a research grant to study IMPROV, performance, identity and community. Let’ hang out! I’m looking for lots of new friends in new places; this is the biggest improvisation I’ve stepped into - both in the sense that it’s what I’ll be studying, and also in the sense that a lot of my itinerary, happenings, housing, etc. will be improvised as I go! I have a lot of ideas, of course, but in the spirit of improv I hope to embrace the moment as much as possible. This year is also an improvisation for me in the dynamics of human relationships - how we rely and depend on each other, how we perform for each other, how we give-and-take. 
In order to make it through the year on my stipend (and also to maximize opportunities to meet and engage with lovely fellow humans!) I’m trying to couch-surf a lot this year! If you or anyone you know might be interested in showing a newbie around your city, might have a spot to host a traveler for a few days, or might be willing to share some insights on the local theatre scene, I’d be so GRATEFUL AND EXCITED to get in touch! I realize I’m asking a lot of the universe - flinging myself into the world and asking for friendship and time and places to sleep for indefinite amounts of time - do I certainly hope nobody feels undue pressure to offer more than they can give! I’m trusting that things will work out and will gratefully accept whatever people can offer. I’m on a tight budget but we can work things out and I’ll be sure to shower you with gratitude in a variety of creative ways - from color-organizing your bookshelves (if you want) to washing your dishes to making you drawings, songs, and poems. I’m traveling pretty light and I’ll keep tidy and out of your way - my biggest luggage is stella, my wheelchair, which is lighteight and foldable, and I usually only use for longer distances. We can chat about accessibility and feel free to ask me any questions, but as a more part-time chair user I’m able to adapt to spaces that aren’t entirely wc accessible. 
I’d LOVE to hear from you - this little note emphasized housing but I’m also so down for hellos, hang outs, improv ideas, etc! Feel free to email me at haley@perabrown.com.
As always, I’m deeply aware of how privileged I am to even be putting this out there - thanks so much to the extended communities who time and again have reached out with ideas, warmth, and support. 
much love, 
haley  
www.thoughtpocket.wix.com/haley
www.watsonfellowship.org]

i have no idea if this will interest anyone on tumblr but I figured I might as well give it a go!  

[image description: a hand-written letter with a cut-out dorky photo of myself waving at the camera and also a small photo of my wheelchair and backpacking pack collaged on. the text reads: 

 HELLO friends of friends and potential future buddies! 

I’m haley, enthusiastic improvising adventurer who is fortunate enough to be traveling the world this year on a research grant to study IMPROV, performance, identity and community. Let’ hang out! I’m looking for lots of new friends in new places; this is the biggest improvisation I’ve stepped into - both in the sense that it’s what I’ll be studying, and also in the sense that a lot of my itinerary, happenings, housing, etc. will be improvised as I go! I have a lot of ideas, of course, but in the spirit of improv I hope to embrace the moment as much as possible. This year is also an improvisation for me in the dynamics of human relationships - how we rely and depend on each other, how we perform for each other, how we give-and-take. 

In order to make it through the year on my stipend (and also to maximize opportunities to meet and engage with lovely fellow humans!) I’m trying to couch-surf a lot this year! If you or anyone you know might be interested in showing a newbie around your city, might have a spot to host a traveler for a few days, or might be willing to share some insights on the local theatre scene, I’d be so GRATEFUL AND EXCITED to get in touch! I realize I’m asking a lot of the universe - flinging myself into the world and asking for friendship and time and places to sleep for indefinite amounts of time - do I certainly hope nobody feels undue pressure to offer more than they can give! I’m trusting that things will work out and will gratefully accept whatever people can offer. I’m on a tight budget but we can work things out and I’ll be sure to shower you with gratitude in a variety of creative ways - from color-organizing your bookshelves (if you want) to washing your dishes to making you drawings, songs, and poems. I’m traveling pretty light and I’ll keep tidy and out of your way - my biggest luggage is stella, my wheelchair, which is lighteight and foldable, and I usually only use for longer distances. We can chat about accessibility and feel free to ask me any questions, but as a more part-time chair user I’m able to adapt to spaces that aren’t entirely wc accessible. 

I’d LOVE to hear from you - this little note emphasized housing but I’m also so down for hellos, hang outs, improv ideas, etc! Feel free to email me at haley@perabrown.com.

As always, I’m deeply aware of how privileged I am to even be putting this out there - thanks so much to the extended communities who time and again have reached out with ideas, warmth, and support. 

much love, 

haley  

www.thoughtpocket.wix.com/haley

www.watsonfellowship.org]

trying this thing of posting some personal photos here as well? we’ll see what happens. this is my lovely wheeled companion getting road-ready. 
[image description: a manual wheelchair with a handmade pinwheel in the spokes and a backpacking backpack on the back is parked in front of an outdoor wall with vines growing up it]. 

trying this thing of posting some personal photos here as well? we’ll see what happens. this is my lovely wheeled companion getting road-ready. 

[image description: a manual wheelchair with a handmade pinwheel in the spokes and a backpacking backpack on the back is parked in front of an outdoor wall with vines growing up it]. 

safe; haley brown May 2014
[image description: an intricate line drawing of a nest - with lavender, twigs, grass, string, and flowers tucked in - occupies the top right quarter of the page. The rest of the page is filled with hand-lettering that reads: there is a lot of room for honesty in love]. 

safe; haley brown May 2014

[image description: an intricate line drawing of a nest - with lavender, twigs, grass, string, and flowers tucked in - occupies the top right quarter of the page. The rest of the page is filled with hand-lettering that reads: there is a lot of room for honesty in love]. 

elephant in the room; haley brown May 2014
[IMAGE DESCRIPTION: Hand-written text along the sides and top of the page reads: “so… is there an ELEPHANT in here or is it just me?” a doodle of me in my wheelchair leaning and looking out from under the word “ELEPHANT” which stretches across the top of the page in large fluffy letters.] 
much of my poster-art (combining text and image) is my way of processing social awkwardness / ambiguous feelings / mini-rants, so here’s one: i’ve mentioned to these teens i work with from pretty early on that i have a disability and just not really made much of it, then a few months later I casually told them I had a fracture and then finally i casually let them know that I’d be using my chair for a while and  then i finally started using my chair (casually) and they just do. not. know. what to do about this in non-awkward terms and they keep trying to joke / address it but in ways that I  really don’t know how to respond to and it seems like they’re too scared to just actually ask about it which is kind of understandable i guess because they don’t know what’s going on and maybe they kind of want to (?) and their discomfort makes me super uncomfortable and i don’t know what to do! i’m not upset with them i just don’t know how to handle this. 
i know i’m not the only disabled (/marginalized in any way) person to deal with this, but man… this project of making everyone comfortable with our bodies; amirite? 

elephant in the room; haley brown May 2014

[IMAGE DESCRIPTION: Hand-written text along the sides and top of the page reads: “so… is there an ELEPHANT in here or is it just me?” a doodle of me in my wheelchair leaning and looking out from under the word “ELEPHANT” which stretches across the top of the page in large fluffy letters.] 

much of my poster-art (combining text and image) is my way of processing social awkwardness / ambiguous feelings / mini-rants, so here’s one: i’ve mentioned to these teens i work with from pretty early on that i have a disability and just not really made much of it, then a few months later I casually told them I had a fracture and then finally i casually let them know that I’d be using my chair for a while and  then i finally started using my chair (casually) and they just do. not. know. what to do about this in non-awkward terms and they keep trying to joke / address it but in ways that I  really don’t know how to respond to and it seems like they’re too scared to just actually ask about it which is kind of understandable i guess because they don’t know what’s going on and maybe they kind of want to (?) and their discomfort makes me super uncomfortable and i don’t know what to do! i’m not upset with them i just don’t know how to handle this. 

i know i’m not the only disabled (/marginalized in any way) person to deal with this, but man… this project of making everyone comfortable with our bodies; amirite? 

Personal Zine-In-Progress (?); haley brown May 2014

I’m thinking about putting this or something like it up on Facebook because I’m so stressed about everything and I just kind of want to address it…

[hello friends, acquaintances, colleagues and strangers! I usually don’t get quite so personal in such a public way, but you know… I have something to say (and I’m tired of wondering what people are wondering!).

so a lot of you know that I have a physical disability, or you’ve probably at least noticed my unusual angles or heard me refer to doctors appointments with a particular wariness. For the curious or concerned, I have BRITTLE BONES, or in fancy: Osteogenesis Imperfecta (OI).

I used to crack ribs just sneezing, then went through a long period of relatively few breaks, and I’ve now started fracturing more often again, mostly in my legs. Who knows what exciting adventures the future has in store for me! All in all I definitely don’t see my disability as making me less able to enjoy life and I definitely don’t wish I were cured. I can’t imagine who I’d be without it!

One thing that has been tricky and stressful is occupying this often “in-between” space. Often people don’t think of me as disabled because of the way I walk or move, and other times they definitely do, like when I limp or use my wheelchair.

It’s actually quite stressful for me to start using my chair more, not because I don’t like it (I’m a speed demon in that thing!) but because I get anxious about how people will respond. I dread the inevitible shocked, pity-laden: what haaaaapennnned??! because there’s really not much of an answer most of the time. uh… I walked? I stepped off a curb? It’s usually less that something has “happened” and more that this is kind of just the way my body IS and it might not have been as visible before.] 

[hypertrophic callus formation in OI type V:

If you’re interested in some detail, my type of OI is characterized by the unusual ways my body handles its frequent fractures. My bones get these “callus” formations on the site of the fracture, a swollen tangle of calficication, soft tissue, etc. It’s creative, no doubt, but also super obnoxious and painful. These tend to cause me more frustration than the fracture itself because it’s hard to know how to take care of them or how to get them to leave me alone. These fluffy, unruly monsters are what I refer to when I talk about having a “callus.” there’s no way to treat or remove them, so I just gotta hang out and try to be supportive while my skeleton does its own thing.]

[Ways to be a SUPPORTIVE BUDDY to me (haley) right now.

Many of my friends don’t necessarily need to think about physical disability all that often. This isn’t an end-all-be-all guide, just a few ideas to start with…

First Things First: I know you’re probably uncomfortable. That’s fair. Nobody teaches us this stuff and it’s different for everyone anyway and it’s pretty taboo to talk about. Here’s an opening to that conversation; hoping we can all be a little more comfortable.

Second, it might be the unfortunate case that I’m your first or only buddy with an obvious physical disability, and whether or not that’s true, it’s worth reminding that I cannot represent or speak for disabled people “in general” or anything of the sort – each of us is different with different physical and social needs and capacities. In fact, this little zine may not even accurately represent or speak for future versions of my self at times, because the nature of my ability and disability fluctuate so much!

  1. Please avoid assuming what my body can/should or can’t/shouldn’t do. I always appreciate when people check in and all it takes is a question: “how are stairs for you right now?” “would you rather drive?” or an invitation “let me know if we need to take a break.”

  2. It really helps me make good decisions for my body when I can gage times / distances – how far is the restaurant, how long is the event, etc. Also knowing the accessibility info about a space! meaning ramps / stairs / elevators / how crowded the place is.

  3. I’ll ask if I really need help navigating a curb or hill, but most often I really prefer not to be pushed in my wheelchair. I’m trying to gain the strength / skill / confidence to do that stuff on my own right now. Also a pet peeve is being patted on the head when I’m in my chair.

  4. I TOTALLY appreciate people’s concern and interest, but questions like: “how long will you need to use a wheelchair?” “how long will your recovery take?” or “how will this affect your future plans?” are really hard and stressful to answer because I genuinely don’t know.

  5. Other questions or more open-ended questions are totally welcome! please feel free to ask me about my disability or experiences. Recognize that if I’m not in the mood to chat about it, I may just be exhausted and you weren’t wrong in asking.

  6. It’s especially exciting to talk about these things when folks are informed in being an ally or learning about the ways in which society constructs disability. (If that excites you, feel free to check out the resources attached or hit the google!)

Finally, please let me know the ways in which I can support you! If there’s one thing disability has taught me, (there are actually many) it’s that interdependence is a thing! part of my intention in being open about this is hoping to help make space for others to do the same. ]

One is not simply a body, but, in some very key sense, one does one’s body
Judith Butler 
dear inspired people; haley brown April 2014

[IMAGE DESCRIPTION: a hand-drawn poster! a drawing of small, gangly bowed-limbed kid in the lower left corner, wearing overalls and holding a chicken. most of the page is filled with text: 
HI! I’m a kid. Like a lot of kids, sometimes I’m BAD. I get in a lot of time-outs and I like to test people and I whine a lot and I love to be tricky and sneaky and I hate brushing my hair. Once I purposely threw a wine glass on the ground as hard as I could. I have a lot of tantrums. like a lot of kids, sometimes I’m GOOD too! Sometimes I’m helpful, funny, and kind. But because I have a physical DISABILITY, adults are always telling me with intense shiny eyes that I’m such a big inspiration.
I can tell that I’m supposed to feel great and say “thank you!” but it makes me feel REALLY WEIRD (in a way I won’t be able to explain until I’m much older, and even then it will be hard) and I don’t know what to do. 
See, I’m just doing my kid thing like everyone else - with the rare moment of insight against PLENTY of meltdowns. Being called an “inspiration” for something that’s entirely out of my control, that’s just an aspect of my daily existence, emphasizes how different I am and how tragic you think it must be to live in this body of mine. 
If you enjoy my company or find me clever or amusing - awesome! I’m genuinely flattered. But if you’re tearfully inspired by my daily existence, you’re teaching me I’m an outsider without even trying. Trust me, I’m all about celebrating DIFFERENCE! But let’s find ways of doing that which don’t pity or patronize disabled kids. 
P.S. When I grow up, please don’t tell me how inspirational you / your friend’s neighbor’s godmother thought I was when I was little. I’ll still feel really weird and I won’t know what to do except make you this goofy poster and then we’ll all feel really weird.” 
thanks for reading!]
trying to go back through my posts and fill in image descriptions! 

dear inspired people; haley brown April 2014

[IMAGE DESCRIPTION: a hand-drawn poster! a drawing of small, gangly bowed-limbed kid in the lower left corner, wearing overalls and holding a chicken. most of the page is filled with text: 

HI! I’m a kid. Like a lot of kids, sometimes I’m BAD. I get in a lot of time-outs and I like to test people and I whine a lot and I love to be tricky and sneaky and I hate brushing my hair. Once I purposely threw a wine glass on the ground as hard as I could. I have a lot of tantrums. like a lot of kids, sometimes I’m GOOD too! Sometimes I’m helpful, funny, and kind. But because I have a physical DISABILITY, adults are always telling me with intense shiny eyes that I’m such a big inspiration.

I can tell that I’m supposed to feel great and say “thank you!” but it makes me feel REALLY WEIRD (in a way I won’t be able to explain until I’m much older, and even then it will be hard) and I don’t know what to do. 

See, I’m just doing my kid thing like everyone else - with the rare moment of insight against PLENTY of meltdowns. Being called an “inspiration” for something that’s entirely out of my control, that’s just an aspect of my daily existence, emphasizes how different I am and how tragic you think it must be to live in this body of mine. 

If you enjoy my company or find me clever or amusing - awesome! I’m genuinely flattered. But if you’re tearfully inspired by my daily existence, you’re teaching me I’m an outsider without even trying. Trust me, I’m all about celebrating DIFFERENCE! But let’s find ways of doing that which don’t pity or patronize disabled kids. 

P.S. When I grow up, please don’t tell me how inspirational you / your friend’s neighbor’s godmother thought I was when I was little. I’ll still feel really weird and I won’t know what to do except make you this goofy poster and then we’ll all feel really weird.” 

thanks for reading!]

trying to go back through my posts and fill in image descriptions! 

a gentle endless fracture

i. inhale

the inevitability of cracks, chaos

buckles into the space between:

a deep, rustling underground

dark, warm

smelling of soul.

ii. exhale

liminal losts

chameleon landscape, chamomile tea and calcifications: mountains emerging in time-lapse

like lungs heaving, believing into wilderness criss-crossed into not-the-same-rivers into veins

valleys hollowing like an exhale cultivated, barely, narrowly

stretching to resist the militant insistence

that we Conquer:

our bodies,

each other.  

rest; haley brown April 2014
[IMAGE DESCRIPTION: a self-portrait, drawn from an angle I find unappealing, mostly for the crooked neck. wispy braided purple hair, glasses, an expression that’s too tired to really give any fucks. winged eyeliner and slight forehead wrinkles. striped tee and overalls, sitting, resting]  

rest; haley brown April 2014

[IMAGE DESCRIPTION: a self-portrait, drawn from an angle I find unappealing, mostly for the crooked neck. wispy braided purple hair, glasses, an expression that’s too tired to really give any fucks. winged eyeliner and slight forehead wrinkles. striped tee and overalls, sitting, resting]  

anti-inflammatory

thigh in my tendons, pulling,

collecting against the boney mass

but i forgot to feel it.

pain the pulley and unmedicate, heartache,

play at the mindgames –

crunch, crunch, crunch –

and dance myself cheater.

shame thinks me into:

bad, i am

edges at grasping.

there was an earthquake down here some time last week

but i forgot to record it

in my log of symptoms.

let’s be reasonable here friend; haley brown April 2014
[IMAGE DESCRIPTION: two seated cartoony figures. on the left: a giant femur bone, with saucer-plate eyes and a small unimpressed mouth, listening. this character has a fluffy monster (representing the bone’s weird tendency to calcify and callus) wrapped around its midsection, with a jagged mouth, large eyes and a horn. it looks menacing but also mildly adorable. 
on the right: a cartoony figure representing me - irritated but compromising, hand extended in truce.] 

let’s be reasonable here friend; haley brown April 2014

[IMAGE DESCRIPTION: two seated cartoony figures. on the left: a giant femur bone, with saucer-plate eyes and a small unimpressed mouth, listening. this character has a fluffy monster (representing the bone’s weird tendency to calcify and callus) wrapped around its midsection, with a jagged mouth, large eyes and a horn. it looks menacing but also mildly adorable. 

on the right: a cartoony figure representing me - irritated but compromising, hand extended in truce.] 

Hypertrophic Callus Formation in Osteogenesis Imperfecta Type V; haley brown April 2014
[IMAGE DESCRIPTION: two standing cartoony figures. on the left: a giant femur bone, with saucer-plate eyes and a self-satisfied smile. this character has a fluffy monster (representing the bone’s weird tendency to calcify and callus) wrapped around its midsection, with a jagged mouth, large eyes and a horn. it looks menacing but also mildly adorable. The femur has a speech bubble that says in jagged child-like text: HEY HI ME SO CREATIVE PAY ATTENTION ME MAKE FLUFFIES WOW ME SO GREAT LOOK OMG WOW WOW.
on the right: a cartoony figure representing me - irritated and unimpressed, arms crossed over chest and middle finger subtly extended toward the femur. The left thigh protrudes uncomfortably.] 

Hypertrophic Callus Formation in Osteogenesis Imperfecta Type V; haley brown April 2014

[IMAGE DESCRIPTION: two standing cartoony figures. on the left: a giant femur bone, with saucer-plate eyes and a self-satisfied smile. this character has a fluffy monster (representing the bone’s weird tendency to calcify and callus) wrapped around its midsection, with a jagged mouth, large eyes and a horn. it looks menacing but also mildly adorable. The femur has a speech bubble that says in jagged child-like text: HEY HI ME SO CREATIVE PAY ATTENTION ME MAKE FLUFFIES WOW ME SO GREAT LOOK OMG WOW WOW.

on the right: a cartoony figure representing me - irritated and unimpressed, arms crossed over chest and middle finger subtly extended toward the femur. The left thigh protrudes uncomfortably.]