Category Archives: Small insurrections

Field Tested Rules for Crrpls

Rules for crrpls: do not ever ever ever ever ever imply that DISability rights is part of the larger struggle for universal human rights, against racism, sexism, gender justice and class power.

Rules for crrpls:  Don’t impose yourself on real social justice movements, attempt to infuse DISability rights into discussions of marginalization, or insist, provide suggestions or even resources that would enhance DISability access in the larger human rights struggle.

Rules for crrpls: Keep your political activism limited to organizations that focus on DISability rights and issues of access that don’t interfere with real social justice work, even if and when those organizations exclude you either because they are run by nonDISfolx, white folx, people with social and economic capital or a professionalized staff not interested in grassroots organizing.

rules for crrpls: When people try to help you, always be grateful. Never contradict them or try to explain what you really need. This will hurt their feelings (enrage them). They’re really doing their best (trying to make themselves feel good at your expense), and it’s not like you deserve to actually have a say in your agency, body autonomy or full inclusion.

rules for crrpls: Do not get offended when people make fun of your health condition or physical or emotional characteristics. Certainly don’t interrupt their fun by pointing out the arrogance, bigotry and entitlement inherent in making fun of people’s afflictions and certainly DON’T turn the tables by making fun of them, when they give you that tired excuse “we’re just kidding, lighten up.” When they say, “anything goes” that doesn’t REALLY mean that you can make THEIR entitled asses the butt of your jokes.

Rules for crrpls:  Don’t ever assert that Disability rights has any place in the larger struggle for social justice and human rights. these people are working hard enough for social justice to have to find time and resources to include your sorry ass.

Rules for crrpls:  Appear grateful and upbeat at all times, and if you can, provide material for the inspiration of people without DISabilities.– You know: paint with your feet, walk on your hands, sing out of your ass– stuff like that. They love that shit.

Rules for crrpls:  Never appear more capable than someone without a DISability. This embarrasses them and interferes with their entitled sense of superiority. There’s nothing worse than appearing less capable than someone already labeled incapacitated.

Rules for crrpls:  Do not discuss your DISability in public. Discussion of DISability is the purview of those who do not have DISabilities, so they can appear magnanimous and generous.

rules for crrpls: Do not say “excuse me” if someone is blocking your way and is deep in conversation. Wait patiently until they are finished. Also, do not attempt to go around them, because they might bump into you and this would startle them.

Rules for crrpls: Don’t ask if an event that is open to the public or that you’ve been invited to, is ACTUALLY accessible. this is rude, as it puts the host on the spot and risks causing them embarrassment.

Rules for crrpls:  Don’t show up to an event that isn’t accessible. This too may lead to the embarrassment of the host. You should magically know with your other hyper sensitive enhanced sensory abilities, if an event is accessible or not.

Got any  more? Leave them in the comments…..

 

Plus Sized Women of a Certain Age

Or: Who Brought Girdles Back?

All the plus models are young, all the older models are thin and some of us wear flats! So what’s up with the heels and the spanx? Our grandmothers wore girdles. We gave up that shit in the 60s and now the fashion industry is convincing an entire generation of young women to bring them back.#spanxaregirdles #nospanxnothanx #heelsdontdefinebeauty#wecantalllooklikejanefondalillytomlindianekeatonandkateysegal #pantsuitsareugly  What do women of a certain age wear? Plus Model Magazine????

You can follow me on facebook at: https://www.facebook.com/emmarosenthal

Facebook screenshot of the fb post from my page, with the text of this blog post

No Room at the Inn.

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two scooters loaded into our van.

well, i’m on vacation, the first vacation in years. it’s piggybacked onto a conference my partner, andy griggs has in oakland.  so we planned to drive up the coast, stay near san luis obispo, drive to emeryville, near oakland, stay for a few days, head back, stay in santa cruz, and come home.

tonight we get to our hotel on avila beach,  which we were able to get at a great rate, through a special program. it’s a very nice place.  i checked the web page and called in advance, before booking the room, where  a high degree of wheelchair access was indicated; even a lift to allow for pool and spa access (which neither of us needs, but it’s an indication that we would be welcome and accommodated, unlike those places where they go out of their way to keep us out. — more on this later.) when i spoke to hotel staff,  i very carefully explained that we didn’t need a wheelchair adapted room (lower cabinets, walk in shower, etc.) but that we needed to be able to get to the room without obstacles (stairs, for example) and be able to get our scooters in the room.  i even asked how many elevators there were and was told that there were two. (because i’ve had the experience of no access because the only elevator is broken and i just couldn’t get to my room.)

we get to the hotel and ALL the accessible parking spaces are taken. the other spaces are down a steep hill, and past rows of cars, which is really dangerous for wheelchair users because cars can’t see us and we can be backed into.  it’s 9:30 PM.  after considerable negotiations a very kind clerk and a very rude security guard “let” us park in the blue striped space which risks a hefty ticket and towing fee.  no other option was given to us and our offer to have the security guard park our car for us is rejected. initially we were told we would have to park down the hill. i explained that we couldn’t do that, that i wasn’t even sure the scooter could get up the hill.  i was exhausted and explained that i was now in a an impossible situation, that they were basically telling me to do something i cannot do.  AND I CALLED BEFORE BOOKING THE RESERVATION.  we we’re told that they have met their legally required number of spaces. like that makes the fact that i can’t leave and can’t stay, any better.  i check and see that neither of the cars on either side of the blue striped space, is a van, which would mean our car would be blocking side door van lift access to their car.

the clerk was embarrassed by the behavior of the security guard who showed absolutely no empathy, and had made sure to repeatedly tell me what he could not do and how the legal responsibility of the hotel had been met. (except that I HAD CALLED BEFORE MAKING THE RESERVATION, AND THEY SHOULD HAVE LET ME KNOW THAT PARKING MIGHT MIGHT MIGHT BE A PROBLEM.) “he’s usually a very nice guy, she said.

“well, dis-ability brings out sociopathy in normally empathic people.” i explain. we’ve seen this before, a lot. many of my fb buddies have seen this on online discussions, and my real world friends have seen this in situations like the one described here, when we go out in public, where absolute cruelty without consequence is demonstrated unabashedly.

we park the car, and head off to the pool and i relax in the hot tub, to the extent that one can relax while paying to be discriminated against. we get up to our room. it’s now 11:00 and we’ve had a long day and we have NO SPOONS* left, and i notice a message light on the phone and call the front desk to find out that while the hotel won’t be towing us for parking illegally in the blue striped space, if another guest calls the cops, we could end up away from home without a car and have to spend some serious time and money to get our car back.

so far no one has offered us anything other than NO-pologies, like “i’m sorry you’re upset”, we’ve not been offered any comps or real options.

what they do offer us, is to allow us to re-park our car at the base of the hill and access the hotel via the employee entrance. had they offered this when we were in the lobby, we would have been fine with this. but it’s 11 PM and we can barely move.  this means scooting down to the lobby, loading the scooter into the van, driving the van down the hill, parking, unloading the scooter  and scooting back up to the room, which is about 2 blocks of corridors from where they are now suggesting we park the car.

andy decides to take them up on this offer, because risking getting a huge ticket or having our car towed is just NOT an option.

earlier in the day we saw a restaurant in santa barbara, and i wish i had pictures, but my digital camera was in the car, and my iphone was out of electricity. it was a restaurant that could have been accessible, it was even ramped, but the management had carefully placed signs and plants and tables in such a way that access was impossible.

this is why so few pwds go on vacation.

now, before some bar hopping, “slunting” pedantic activists from yale, or USC,  privilege bait me (you know who you are!)  for having the nerve to complain that i can’t access a luxury vacation (it’s not like low end travel is even remotely an access option!), please tell me, are there any other demographics to whom hotels and restaurants would acceptably bar access; would refuse to provide equal service for the same payment?

the day was otherwise pleasant, beautiful coast, photography, talking in ways we haven’t before, or at least so long ago,  i can’t remember,  and much needed time together, but right now, i don’t really want to be here, and yet i also am just not able to leave, either. i do hope tomorrow is better.

and returned to the room, and tells me the charger to my scooter isn’t working. we have one charger between us, for two scooters. hoping we don’t lose that one too.

relax relax relax.  ohhhhhhhhhhmmmmmmmmmmm.

*http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

letter to a friend who suggests i am sick because i want to be

your ideas aren’t new to me. i don’t talk about my illness nor am i sick in order to get attention or because this is what i actually want. i have enough talented and intelligent, that if i weren’t this sick, could get a whole lot of attention doing a whole lot of things. as it is, i could get more attention pretending my illness didn’t impact my life the way it does. i could get a whole lot of attention pretending to be positive and happy, when i’m really not. i think there is a greater truth to be told, and a cost to that truth, but i also appreciate that my ability to articulate my experience is of benefit to those who also endure what i endure, but don’t have that capacity. —they tell me this! hearing from people who are validated by my words is priceless and makes my efforts valuable, to me, and apparently to others.

i think we live in a very compassionless society that blames people for their misfortunes and loves stories about people who “made it”. it’s a lot easier than actually taking care of each other. it’s easier than compassion, and it’s a politic that supports a brutal ruling class– that the rich got where they were, because they THINK better, that healthy, beautiful people are somehow more spiritual, superior.

it’s a politic that i embraced at one point in my life, and it rejected me. it doesn’t work. at a certain point all it does is create huge areas of denial –denial of pain, denial of people from the margins.

i do make healthy choices– eat healthy foods, do yoga, meditate, take vitamins, etc. i’ve tried many expensive modalities for treatment. i’ve thought good thoughts, etc. i’m sick. it’s just the way it is. (actually there are things i can do to get better, but some of them are too expensive right now. i simply don’t have the money.) thing is, when i get sick like this, speaking the truth about my condition, and resting resting resting is what helps. i’ve had this condition for 15 years. i know what it takes to manage it.

friends who want to help can offer to do so. they can ask my partner what they can do to ease his responsibility. they can give me rides to drs offices, bring over food, help out around the house, bring groceries, help raise funds for the care i can’t afford, support my work, or even, just visit. just sit and bear witness to what i real, what the present challenge is. — the things people used to do for each other, what they still do in compassionate communities.

life isn’t changed because we think good thoughts. nice idea, but it just doesn’t work that way. i’ve know a lot of people who were really silenced and marginalized with this thinking– people who have survived cancer, but not because they thought better than the people who didn’t. i lost friends to cancer who tried to be positive, ate all the right foods, did all the right things. i think it added to their stress, when what they really needed was to say exactly how frustrated, scared, alone they felt.

we tell people they create their own condition because it excuses a whole lot of injustice and marginalization, and because it makes us comfortable. it’s not easy listening to people in pain. it’s not easy listening to people who complain. it’s a lot easier to silence that in a spirituality of complicity and obedience. it’s certainly a lot easier than actually fixing this mess the world is in, and creating a society that meets human needs.

i also am not a fan of madonna. (the friend who this is to, used her as an example of positive actualization and insight).  she’s a very mean and narcissistic person who has left a lot of bodies in her wake. the way she treats people who work for her, in her own words, is hardly positive, kind or healing. she’s no one i look up to. she has masterfully marketed her extreme talent into meaningless pop drivel and sexual objectification. as for her attachment to kaballah– it’s an ancient tradition, not a passing fad. it is very complex, not something that can be simplified for mass production. cultural appropriation is never attractive.

i haven’t come to these ideas casually, nor have your suggestions failed to make their mark on my life, nor have i rejected them capriciously.

i think greater healing though is had through telling the truth, no matter how inconvenient or uncomfortable. i know i am at odds with the culture around me, but nothing changes without complaints and non-conformity. i would rather find myself a small counterculture of resistance than find ways to please and appease an intolerant and compassionless society that blames people for their conditions, instead of insisting on ways to meet human necessity and asking people what they need.

i don’t want to have this conversation more than once, because i find it very hurtful and isolating. there is something more negative than the negativity sick or otherwise marginalized people are often accused of. it is the negativity of negating the full range of human experience and existence. it is the negativity of telling people what they have to say, who they are as they are, has no place in the larger society and is their own fault, if they only thought better or adopted some magic protocol.

there is a difference between curing an illness, and healing. healing is a much deeper process that requires deep truth telling, process and transformation. it is often quite wrenching, lonely and painful. (it is why so many cultures have initiation rituals that involve pain).

(at this point in time, there are no cures for my condition, though there are ways of managing it.)

i am not interested in maintaining the world the way it is, on either a small or large scale. i am interested in the deeper transformation, the deeper healing, and we won’t get there by insisting we need to think positively. we will only get there when we can clean up the muck that keeps us apart, that separates, that exploits and that poisons us. we certainly won’t get there by telling people in difficult circumstances, that their reality exists because they want to live that way.

(anyone who really knows me, knows i have a tenacity and a spirit that is hardly complacent or stagnant.)

my illness is caused by trauma and environmental toxins. without going into the details here (storytelling doesn’t mean some things aren’t private), the trauma i endured most people don’t survive. the trauma i endured is rooted deep in the power relationships of a brutal body politic, that i am determined to fight, on every level.

i tell the truth. i don’t just lie in this bed, sick, meditating, waiting, eating well, etc. i share my journey and i express my journey as a political one, among the larger issues of the day, imperialism, health care, education, oil spills, domestic violence, genocide, racism, sexism, ableism, heterosexism, etc. and i challenge those systems that allow these negative realities to go unchallenged under a cloud of enforced positivity and false blame.

Sickbed ennui in the land of banana leaf hope

  1. Another twitter storify: http://storify.com/emma_rosenthal/sickbed-ennui-in-the-land-of-banana-leaf-hope
  2. Share
    i wish i had more energy to do more with my life.
    Sun, Apr 01 2012 15:58:43
  3. Share
    this constant fatigue provides little strength fortasks i feel give meaning, purpose and healing to this broken crying world.
    Sun, Apr 01 2012 15:58:48
  4. Share
    strong winds blow in the southland of the angels. making stop motion blur on silver film.
    Sun, Apr 01 2012 15:59:56
  5. Share
    i want the wind to carry me, lift me up, take me somewhere else away.
    Sun, Apr 01 2012 16:00:26
  6. Share
    away from this sick bed ennui. the tedium of cellular efforts. the hard work of waiting waiting waiting for strength.
    Sun, Apr 01 2012 16:00:51
  7. Share
    i want to fly on a banana leaf, to some other place, where sick gurl dreams become something more than fear and loss.
    Sun, Apr 01 2012 16:01:25
  8. Share
    there is so much to do to heal this wounded crying world. i have so much shuffled away in other world plans.
    Sun, Apr 01 2012 16:02:13
  9. Share
    plans, wishes dreams, stored in boxes, cabinets, bell jars and the corridors of my mind.
    Sun, Apr 01 2012 16:02:48
  10. Share
    i wander empty spaces of time. days that are marked only by disappearing cups of tea
    Sun, Apr 01 2012 16:03:24
  11. Share
    and the march of the shadows of banana leaves on neighbor’s walls as this corner of earth spins to and from rays of our local star.
    Sun, Apr 01 2012 16:04:14
  12. Share
    hope is dangerous territory. my most feared neighborhood,
    Sun, Apr 01 2012 16:05:00
  13. Share
    where ideas are washed away faster than the fleeting work of stealth artists on alley walls.
    Sun, Apr 01 2012 16:05:05
  14. Share
    i am writing again, without fear or hope of publication. wordpress and storify are my hogarth press. i have a room of my own.
    Sun, Apr 01 2012 16:07:11
  15. Share
    the world moves around me. i am more like the sun than earth. it only looks like time revolves around me, from my perch overlooking hills
    Sun, Apr 01 2012 16:09:02
  16. Share
    i feel like it all spins without me, in this box in the center of the storm. waiting waiting waiting. unlike the sun i am nothing immobile
    Sun, Apr 01 2012 16:11:02
  17. Share
    lists to do scatter like dust, pollen and bird feathers from broken winds. i want my banana leaf wings.
    Sun, Apr 01 2012 16:15:44
  18. Share
    i want this wind to take me somewhere where my dreams can fly.
    Sun, Apr 01 2012 16:15:51
  19. Share
    but tomorrow the walls will still be peach against a purple trim. banana leaves will flutter against the green garden walls
    Sun, Apr 01 2012 23:17:51
  20. Share
    and i will still be plastered to flannel sheets. wind provides the illusion that change is sweeping thru,
    Sun, Apr 01 2012 23:18:39
  21. Share
    that stagnant air makes way for new possibilities. that opportunity is there to be grasped.
    Sun, Apr 01 2012 23:20:10
  22. Share
    that i could fly away on a banana leaf and not look back.
    Sun, Apr 01 2012 23:20:15

Dreaming of a hot breakfast

  1. Share
    still not out of bed after several days of total bed rest. hoping to do something productive today.
    Mon, Mar 26 2012 12:20:37
  2. Share
    dreaming of a hot breakfast– bagel creamcheese, w egg, maybe. and bitter green jasmine tea, but i can’t get to the kitchen.
    Mon, Mar 26 2012 12:21:13
  3. Share
    i’ll make breakfast when the hunger exceeds my fatigue. until then i’ll wait in bed hungry. this is amerikkkan health care.
    Mon, Mar 26 2012 12:21:43
  4. Share
    and i have health care coverage. it’s even what they call cadillac care. but it doesn’t cover in home support when i can’t get up.
    Mon, Mar 26 2012 12:22:15
  5. Share
    my health care doesn’t cover much of what helps me manage my illness. it pays for lots of tests test test. but no actual care.
    Mon, Mar 26 2012 12:22:47
  6. Share
    i need regular massage, chiropractic, reiki or acupuncture, but none of that is covered. what’s covered? medication– which helps some.
    Mon, Mar 26 2012 12:23:26
  7. Share
    what else is covered– tests and more tests. dr.s appts. treatments that don’t help. treatments for other conditions some other people have
    Mon, Mar 26 2012 12:24:35
  8. Share
    therapy is covered, because if i talk abt it enough the illness will go away and i’ll fly to the kitchen on my self actualized wings.
    Mon, Mar 26 2012 12:24:56
  9. Share
    @emma_rosenthal and that just made me laugh so hard I peed a little. Omg
    Mon, Mar 26 2012 12:36:53
  10. Share
    .@AureliaCotta they tell me i keep my sense of humor thru the worst trials. i try. i’ll be performing here all week!
    Mon, Mar 26 2012 12:39:51
  11. Share
    not that therapy doesn’t help. but how much good can come from talking about something that can’t be changed?
    Mon, Mar 26 2012 12:25:48
  12. Share
    getting hungrier. the sun is out. i saw it hitting the banana leaves. but no shadows yet, it has to pass over the house to the back yard.
    Mon, Mar 26 2012 12:26:33
  13. Share
    i’m so hungry. trying to get up. really trying. this is so fucking frustrating.
    Mon, Mar 26 2012 12:42:39
  14. Share
    tho now,just getting out of bed & to the kitchen is overwhelming. i just can’t command my body to do what it needs to do to make that happen
    Mon, Mar 26 2012 12:46:10
  15. Share
    of course,once i get to the kitchen i’ll have to remember how to toast a bagel and make tea. sometimes i can’t think things that complicated
    Mon, Mar 26 2012 12:43:13
  16. Share
    and if something is out of place, one aspect of the routine that takes additional thought, i’m lost. this is fibromyalgia brain fog
    Mon, Mar 26 2012 12:43:47
  17. Share
    like if there isn’t a clean tea pot. then i go nuts. the idea of having to clean the tea pot, that can be too much sometimes.
    Mon, Mar 26 2012 12:44:25
  18. Share
    i do however have the capacity to get a tweet from -40 characters down to 120. ha ha ha . go figure.
    Mon, Mar 26 2012 12:46:54
  19. Share
    i’m hungry. i’m very very hungry.
    Mon, Mar 26 2012 12:47:20
  20. Share
    anyone who says “we don’t realize how easy we have it in amerika” doesn’t have a clue abt what most ppl in amerika deal with.
    Mon, Mar 26 2012 12:47:50
  21. Share
    .@Farese9190 @TodayHIRING no fucking way! i tweet abt how sick i am and i get spam telling me to get a fucking job?? see– amerikkka!!!!
    Mon, Mar 26 2012 12:49:04
  22. Share
    .@Farese9190 @TodayHIRING i would get a job if i could. right now i can’t fucking get out of bed.
    Mon, Mar 26 2012 12:49:37
  23. Share
    got damn fucking spam bot, thinks this is an appropriate rsponse to chronic illness! typical @Farese9190 @TodayHIRING
    Mon, Mar 26 2012 12:50:06
  24. Share
    i really hate this level of helplessness. all i want is a fucking bagel and some hot tea.
    Mon, Mar 26 2012 12:53:03
  25. Share
    okay, i got breakfast. hope i didn’ t leave the stove on. ugh. back in bed, with a tray of wonderfulness.
    Mon, Mar 26 2012 13:14:43
  26. Share
    i just fell. i was in bed and i fell. no i didn’t fall OUT of bed i fell in bed. how does someone fall in bed?
    Mon, Mar 26 2012 13:25:58
  27. Share
    okay, i’ve been sitting up long enough. this has been a lot of work. can’t type lying down. so, i’ll be back later. time to rest.

in the company of banana leaves: anatomy of chronic illness

  1. tShare
    people tweet their play by play of many experiences. chronic illness is a part of the human narrative. i tweet my life. this is it.
    Sat, Mar 24 2012 17:18:34
  2. Share
    anatomy of my illness. a day in bed. a week in bed. a lifetime that feels at time wasted. ideas ideas. no vehicle to transport those ideas
    Sat, Mar 24 2012 19:07:27
  3. Share
    in my former home, i kept company with a pomegranate tree. today the tree outside my window is a banana tree.
    Sat, Mar 24 2012 19:07:59
  4. Share
    banana trees have long big leaves, 8 feet long at times. they dance in the breeze, cast shadows on my neighbor’s wall.
    Sat, Mar 24 2012 19:08:46
  5. Share
    the younger leaves are long ad solid with one stem down the middle. the older leaves are wind torn into strips on either side of that stem
    Sat, Mar 24 2012 19:09:24
  6. Share
    the banana leaf shadows flutter against the green walls of the neighboring building, but only in the afternoon.
    Sat, Mar 24 2012 19:10:08
  7. Share
    the morning light doesn’t cast a shadow onto the wall. it takes a later sun to make my neighbor’s wall dance.
    Sat, Mar 24 2012 19:10:40
  8. Share
    banana leaf shadows get longer later in the day. deep inside my gut i dance with these leaves and they lift me up a little bit. just a bit.
    Sat, Mar 24 2012 19:11:21
  9. Share
    chronic illness is very heavy long & deep it requires much waiting. timeless except that marked by shadows of leaves on stucco walls
    Sat, Mar 24 2012 19:12:32
  10. Share
    there are other quiet markers– the coming and going of other people, my cat jumps on the bed acknowledges me and the sleeps at the foot
    Sat, Mar 24 2012 19:13:37
  11. Share
    otherwise, a second in time lasts for days. it is morning all day until it is too dark in my room, curtains must be drawn and lights go on.
    Sat, Mar 24 2012 19:14:33
  12. Share
    i drift in and out of sleeping and wakefulness. i often confuse my dreams for what has truly happened, until i am confronted with reality
    Sat, Mar 24 2012 19:16:07
  13. Share
    in all that time i never left the house, and few stopped by. what i think has happened could never have come to pass.
    Sat, Mar 24 2012 19:16:40
  14. Share
    through wavy antique glass on the old windows of my home i can hear the banana leaves blowing in the wind and the birds singing.
    Sat, Mar 24 2012 19:17:31
  15. Share
    i may make my way to the front porch, for a bit. and then return back to bed to rest some more.
    Sat, Mar 24 2012 19:17:59
  16. Share
    when i am strong enough i sit up and tweet or chat on fb, but soon gravity becomes too heavy and i have to lie down again.
    Sat, Mar 24 2012 19:18:58
  17. Share
    isolation plays tricks on me, my mind conspires with hidden demons telling me of my inherent worthlessness. in dark quiet moments i agree.
    Sat, Mar 24 2012 20:25:31
  18. Share
    by end of day the wall is full of banana leaf shadows, rattling together, applauding with great fanfare, these tiny accomplishments
    Sat, Mar 24 2012 21:05:35