#speaking as someone with a chronic condition i hate when ppl are like u have it easy. like actively as i'm writing this my hands r

[inkskinned]

the thing about art is that it was always supposed to be about us, about the human-ness of us, the impossible and beautiful reality that we (for centuries) have stood still, transfixed by music. that we can close our eyes and cry about the same book passage; the events of which aren't real and never happened. theatre in shakespeare's time was as real as it is now; we all laugh at the same cue (pursued by bear), separated hundreds of years apart.

three years ago my housemates were jamming outdoors, just messing around with their instruments, mostly just making noise. our neighbors - shy, cautious, a little sheepish - sat down and started playing. i don't really know how it happened; i was somehow in charge of dancing, barefoot and laughing - but i looked up, and our yard was full of people. kids stacked on the shoulders of parents. old couples holding hands. someone had brought sidewalk chalk; our front walk became a riot of color. someone ran in with a flute and played the most astounding solo i've ever heard in my life, upright and wiggling, skipping as she did so. she only paused because the violin player was kicking his heels up and she was laughing too hard to continue.

two weeks ago my friend and i met in the basement of her apartment complex so she could work out a piece of choreography. we have a language barrier - i'm not as good at ASL as i'd like to be (i'm still learning!) so we communicate mostly through the notes app and this strange secret language of dancers - we have the same movement vocabulary. the two of us cracking jokes at each other, giggling. there were kids in the basement too, who had been playing soccer until we took up the far corner of the room. one by one they made their slow way over like feral cats - they laid down, belly-flat against the floor, just watching. my friend and i were not in tutus - we were in slouchy shirts and leggings and socks. nothing fancy. but when i asked the kids would you like to dance too? they were immediately on their feet and spinning. i love when people dance with abandon, the wild and leggy fervor of childhood. i think it is gorgeous.

their adults showed up eventually, and a few of them said hey, let's not bother the nice ladies. but they weren't bothering us, they were just having fun - so. a few of the adults started dancing awkwardly along, and then most of the adults. someone brought down a better sound system. someone opened a watermelon and started handing out slices. it was 8 PM on a tuesday and nothing about that day was particularly special; we might as well party.

one time i hosted a free "paint along party" and about 20 adults worked quietly while i taught them how to paint nessie. one time i taught community dance classes and so many people showed up we had to move the whole thing outside. we used chairs and coatracks to balance. one time i showed up to a random band playing in a random location, and the whole thing got packed so quickly we had to open every door and window in the place.

i don't think i can tell you how much people want to be making art and engaging with art. they want to, desperately. so many people would be stunning artists, but they are lied to and told from a very young age that art only matters if it is planned, purposeful, beautiful. that if you have an idea, you need to be able to express it perfectly. this is not true. you don't get only 1 chance to communicate. you can spend a lifetime trying to display exactly 1 thing you can never quite language. you can just express the "!!??!!!"-ing-ness of being alive; that is something none of us really have a full grasp on creating. and even when we can't make what we want - god, it feels fucking good to try. and even just enjoying other artists - art inherently rewards the act of participating.

i wasn't raised wealthy. whenever i make a post about art, someone inevitably says something along the lines of well some of us aren't that lucky. i am not lucky; i am dedicated. i have a chronic condition, my hands are constantly in pain. i am not neurotypical, nor was i raised safe. i worked 5-7 jobs while some of these memories happened. i chose art because it mattered to me more than anything on this fucking planet - i would work 80 hours a week just so i could afford to write in 3 of them.

and i am still telling you - if you are called to make art, you are called to the part of you that is human. you do not have to be good at it. you do not have to have enormous amounts of privilege. you can just... give yourself permission. you can just say i'm going to make something now and then - go out and make it. raquel it won't be good though that is okay, i don't make good things every time either. besides. who decides what good even is?

you weren't called to make something because you wanted it to be good, you were called to make something because it is a basic instinct. you were taught to judge its worth and over-value perfection. you are doing something impossible. a god's ability: from nothing springs creation.

a few months ago i found a piece of sidewalk chalk and started drawing. within an hour i had somehow collected a small classroom of young children. their adults often brought their own chalk. i looked up and about fifteen families had joined me from around the block. we drew scrangly unicorns and messed up flowers and one girl asked me to draw charizard. i am not good at drawing. i basically drew an orb with wings. you would have thought i drew her the mona lisa. she dragged her mother over and pointed and said look! look what she drew for me and, in the moment, i admit i flinched (sorry, i don't -). but the mother just grinned at me. he's beautiful. and then she sat down and started drawing.

someone took a picture of it. it was in the local newspaper. the summary underneath said joyful and spontaneous artwork from local artists springs up in public gallery. in the picture, a little girl covered in chalk dust has her head thrown back, delighted. laughing.

#writeblr #warm up #this is longer than i wanted i really considered removing that part about myself and what i went thru #but i think it really fucking bothers me that EVERY time i talk about being an artist #ppl assume i just like. had the skill and ability to drop everything and pay for grad school. #like sir i grew up poor. my house wasn't a safe space. i gave up a FREE RIDE TO LAW SCHOOL. for THIS. bc i chose it. #was it fucking hard? was i choosing the hard thing?? yes. #but we need to stop seeing artists as lazy layabouts that can ''afford'' to just ''sit around and create'' #when MANY - if not MOST - of us are NOT like that. we have to work our fucking ASSES off. hard work. long and hard work #part of valuing artists is recognizing the amount we sacrifice to make our art. bc it doesn't just #like HAPPEN to us. also btw it rarely has anything to do with true talent. #speaking as someone with a chronic condition i hate when ppl are like u have it easy. like actively as i'm writing this my hands r #ACTIVELY hurting me. i haven't been posting bc my left hand was curled in a claw for the last week #this isn't fucking luck. after a certain point it's not even TALENT. it's dedication & sacrifice. #''u get to flounce around and do nothing with ur life'' is a narrative that is a direct result of capitalism #imagine if we said that about literally any other profession. #''oh so u give up 10 yrs of ur life to be a doctor? u sacrifice having a social life and u get SUPER in debt? #u need to work countless hours and it will often be thankless? well i wish i was that lucky'' #we should be applying that logic to landlords ONLY #''oh ur mom and dad gave u the money to buy a house? and all u did was paint it white and rent it? huh.''

[bigbluebarns-blog]

ABLEISM REDUX

Well… There are so many different dimensions of disability that people can be ableist toward those with different disabilities than their own. …And it’s only in the last couple of generations (within my lifetime, at least) that Disability Rights groups have banded together in a common cause (Rather than, say: Rights groups for the blind working only for the blind, Rights groups for Cerebral Palsy working only for Cerebral Palsy, etc.).  Matter of fact, based on my own recollections, I think working together for universal access rights only really got any steam in the 1970s – when I was already a teenager.

Confession time: until relatively recently (like, the last 10 years, or so), as a physically disabled person, I was biased against those with intellectual disabilities, and would get quite insulted if anyone mistakenly thought I was “R

—–ed.”

@theborkplanet IDK HOW TO SEPARATE MY COMMENTS FROM YOURS AND COMMENTS FROM YOURS. HENCE THE CAPS. 

I WAS ALSO BIASED AND PROBABLY STILL AM SOMEWHAT, TOWARD PPL WITH INTELLECTUAL DISABILITIES(ID). I TOO USED THE R WORD. GROWING UP MY EXP WITH PPL W/ ID WERE NEGATIVE OR GROSS, AND NO ONE EVER BOTHERED TO EXPLAIN SOMEONE’S ID TO ME, SO ALL I KNEW WAS NEGATIVE BEHAVIORS EG JO GRABS STUFF AND SCREAMS; NO ONE EVER EXPLAINED HER AUTISM. MOE HAS DOWNS SYNDROME, IS OBSESSED WITH SAYING “BOOBIES” LOVES THE EFFING BEACH BOYS AND FARTS A LOT AND NEVER SHUTS UP; HOW ANNOYING; NO ONE EVER TOLD ME ABOUT PERSEVERATING, OR THAT DS CAN CAUSE GI PROBS SOMETIMES. AL MUTTERS, HE STINKS, AND HE KNOCKED OUT HIS AIDE SO I’M AFRAID THAT AL WILL GET ANGRY WITH ME AND KNOCK ME OUT; NO ONE EVER EXPLAINS HIS CONDITION, SO I GLEAN MY INFO FROM EAVESDROPPING and RUMORS. THE ABLE-BODIED ADULTS DIDN’T BOTHER TO PROMOTE UNDERSTANDING EVEN THO WE WERE ALL TRAPPED ON THE SAME SPECIAL ED BUS, SO THE PASSENGERS WITHOUT ID TALK SMACK ABOUT THE ONES WITH ID. THE ONE TIME I ASK, “WHAT’S AL HAVE?” ABLEBODIED ADULT SHAMES ME FOR ASKING AND BLATHERS ABOUT CONFIDENTIALITY. NOT TRYING TO JUSTIFY MY PREJUDICE; JUST RELATING EXP. I’M ALSO WORKING THRU IT BUT U R RIGHT; NEVER 100% DONE. 

I’m working through it, and like to think I’m getting better (and one huge part of that is learning just how deep and intertwined institutionalized ableism really is, in our societies). But as with being a White woman dealing with racism, I have to remember that it’s a case of continuing recovery, and not something I will ever be 100% over and done with.

Thanks for sharing, @aegipan-omnicorn. You’re lovely.

@bigbluebarns, I don’t personally know anything about suffering racism, being a white american myself. However, I do know a thing or two about suffering ableism, both at the hands of able-bodied people, and disabled people.

People are incredibly social animals and will band together in groups with other similar people. This is natural, and it is good. It can be healing and cathartic to hang out with people who “get it.” But this tendency can also have an extremely dark side, as we see with “isms.” This is going to get long, so I’m going to break it here in consideration of people’s dashboards. Again, I can only speak to ableism and sexism so please keep that in mind.

OMG, I LOVE THESE NAMES AND TRADEMARKS. DID U INVENT THEM?

Ableisms I have suffered at the hands of disabled people:

The Cripple Police™: These are the people who, in an overzealous bid for limited access available, arbitrarily decide who is disabled enough to use a mobility aid, bathroom stall, parking spot, and even sometimes the label of “disabled.” If you are not Crippled Enough, you can be subject to any form of social punishment they deem to be necessary.

I HATE THE CP AND I’M CONSTANTLY REMINDING PPL THAT U DO NOT HAVE TO APPEAR DISABLED IN ORDER TO USE HANDICAP PARKING. IT’S LIKE THEY WANT U TO WEAR A TAG STATING U R DISABLED SO THEN THEY CAN ASSESS IF U MEET THEIR RANDOM CRITERIA.

Example: I used to be able to walk longer distances with a service dog, but was still a high fall risk. My doctor (a licensed neurologist) prescribed me a parking placard so that none of us had to worry (as much) about me passing out in a parking lot where no one could see me, and getting run over. A lovely woman in a wheelchair, who just happened to park in the accessible spot next to me, proceeded to scream at me and my service dog all the way into the store. A manager rescued me by going along with my ruse of knowing him, and invited me into the back were I fucking hid away until they told me she had left the store. It. Was. Scary.

EGAD SOUNDS HORRIBLE. BUT YEAH THERE IS A DISABILITY HIERARCHY

The Born This Ways™ : The experience between people who were born disabled, and who acquired disability later in life, vary a great deal from one another. BTW ableist types actively minimize the experiences of other disabled people, simply because they hadn’t been baptized since birth by xyz. In other words, the suffering was not identical to their own, thus must be invalid.

Example: I became disabled after adulthood, and tried to find solace after being subjected to ableist responses from friends and family members who were unable to cope with the “broken me.” I found lots of great disabled people who helped me, but I also found people who routinely scoffed at my experiences, again informing me that I was not “disabled enough,” and suggested I was being deliberately weak, or histrionic. Sometimes it was almost eerily word for word what my ableist friends/family said. How strange…

I’VE SEEN THE ACQUIRED DISABILITY IS BETTER. TM ADIBS MIGHT IMPLY, “WELL I’M A QUAD, BUT AT LEAST I GOT TO EXP BEING ABLEBODIED; I’LL HAVE EXP U SADSACK LOSER BTWS WILL NEVER HAVE. I GOT TO BE NORMAL FOR A WHILE” MOST OFTEN I SAW IT COME FROM PARALYZED PPL WHO WISHED THEY COULD WALK AGAIN. I WAS BORN WITH CP AND AB PPL ACTUALLY ASKED ME “WOULD U RATHER BE BTW OR AD?” BEFORE I THOUGHT ABOUT IT, I SAID “BTW, CUZ THATS ALL I KNOW AND I’VE HAD IT FROM DAY1 FALSE EQUIVALENCY WHEREAS ADIBS HAVE TO ADJUST” NOW THO I KNOW THAT EVEN I AS BTW HAVE HAD TO ADJUST TO CHANGING SYMPTOMS. DO U WANT 2 BE A TREE OR A MOUSE...UHHH...FALSE EQUIVALENCY ALERT, CAN’T COMPAPARE APPLE N ORANGE.

The Faker Police™: I think anyone with an invisible illness has experience with this one. This is when people who “look disabled” refuse to believe someone who “does not look disabled,” and proceed to treat them as hysterical attention seekers instead of…well, anyone else. These people often practice double ableisms–I have noticed that many also tend to judge Disabled Enough based on mobility aids. Then, they try to chase the “fakers” out of the community, because everyone knows “fakers” are why we have additional burdens added (like further hurdles to access, government aid, etc).

ALSO IF U HAVE AN INVISIBLE DISABILITY LIKE YOURS AND ME ALSO, I SEE THE “WELL EVERYONE GETS DEPRESSED/SAD/TIRED.” I END UP FEELING LIKE I HAVE JUSTIFY THE DISABLING NATURE OF MY DEPRESSION/ANXIETY TO A WEG. 

Example: Before my condition had progressed to me needing a mobility aid, I was already facing discrimination in the workplace. I requested an accommodation to have the crappy fluorescent lights removed from above my desk, as they provoke bad neurological symptoms. You’d think it was a little thing, but when I asked for advice on dealing with skeptical and belligerent management, I met the same reactions in some disabled people, followed immediately by “Fakers like you are why we see knee-jerk reactions like the word ‘no!’ Come complain when you’re actually disabled and need to have a ramp installed! Until then suck it up!”

The Totally Qualified Disability Judges™: This one seems to arise from the natural tendency of people to compare their situations to the situations of others. If they arbitrarily judge another person’s situation to be better or more favorable, then that person is not As Disabled, or Disabled Enough, or Disabled At All. Then, based on that judgment, they try to socially punish the condemned, or to excommunicate them.

Example: Some conditions are really straightforward and don’t vary widely. People with the condition all seem to have similar limitations. My condition is the exact opposite of that. I have the chronic form of migraine disease. Lots of people get migraines, but not all of them have more than 15 a month, and migraines can last anywhere from a few hours to three days. To some people, pain is the most disabling feature of a migraine, to others, the accompanying neurological weirdness is. (Migraines are often proceeded by cortical spreading depression, a phenomenon also exhibited in epilepsy. Just for an example).

So, when people hear what my condition is, they remember that one lady they used to know who had to lay in the dark for a couple days each month, and wonder why the hell I’m in a wheelchair. It doesn’t make sense to them (who cares that migraines don’t make sense to the most brilliant neurologists in the world), so they decide that I just must not be disabled. Or, if I am, it’s hypochondria. 

 I’VE SEEN: YEAH HAVE U TRIED XYZ CURE? IT REALLY HELPED THAT 1 LADY. IF U DON’T TRY XYZ WELL THEN UR LAZY N ALSO PROBABLY FAKING THE EXTENT OF UR DISABILITY?

Fun fact: Internalizing ableism from medical doctors, and from some close friends and family, and THEN the disabled people I came into contact with later, and from whom I seeked guidance, prompted so much self doubt that I had a licensed psychologist work me up for hypochondria and other related psychological conditions. It…turns out that I am not a hypochondriac. I could not find relief from all of these experiences until I encountered a neurologist familiar with my condition, and fellow disabled people who have been around the block, and who are not so embittered by their experiences that they deigned to expose others to the same.

For that reason, I will always be vocally critical of ableism within our community. I will not sugar coat it, nor will I flatter ableist disableds by giving them another name. That goes for my own ableism, too. Now that I have worked through a lot of my own, I can use my aids with confidence and obtain a freedom that is at least emotionally similar to the one I had when I first formed my adult identity (which was as an abled person).

AH YES, IN MY CASE, INTERNALIZED ABLEISM=ANXIETY N DEPRESSION. STILL NOT SURE IF DISABLED PPL CAN BE TECHNICALLY DISABLED BUT THAT’S JUST LINGUISTIC SEMANTICS.

CLEAERLY WE BOTH KNOW DISABLED PPL ARE CAPABLE OF ASSHOLERY.

CAN SOMEONE TELL ME HOW TO BOLD TEXT IN POSTS? #TUMBLR NOOB

For an example of sexism from women, see my post Never Underestimate Old Women, in which an old lady cashier schools us for self-righteous activism.

Thanks for the discussion!

#ableism #disability #disabled