Wednesday, June 11, 2014

Doing the Disability Drag (Get Your Cripface on!)

Oh, yeah, this is an official BAD CRIPPLE blog entry. Bad Cripple says, "Only you can stop kicking wheelchair wheels during movie viewing. They did not let me in for free because I brought my own chair, asshole!"

A blond, blazer-ed PatientC trying to look casual for a wheelchair picture.

Recently, after I mentioned a crip face issue on Facebook, a friend asked me to point her towards resources on the topic. I am usually happy to do that for anyone interested in a social justice topic, especially folks I know (given the usual: spoons available, respectful request, all that sort of thing). I was only able to point her towards an article on the fantastic but defunct FWD. Most of the resources I had compiled way back when are all gone. So come with me and we will make a new one here.

Disability drag/crip face/cripface/crip drag all describe the same thing: the act of behaving as if one has a disability that one, in fact, does not have. Usually this is done by TAB (temporarily able bodied) person, but it can be done by anyone. A person with a disability cannot cripface their own disability, but can cripface one that is not theirs. It is not usually considered cripface to temporarily take on the qualities of a disability that one has had in the past, as they are pulling from their own lived experiences and not demeaning someone else's life experience.

Crip drag is always a display of privilege and is always ableist/disableist

ProTip: if you are not yourself disabled, you should stay away from using the word cripple (and that word family). Stick with disability.

Cripface is part of a long tradition of people with institutional & social power, with privilege, appropriating the experiences and lives of those without it. It is on the same field as yellow face, black face, poverty drag and other tasteless and hurtful impersonations of the very social structures that cause these inequities. I make no moral equivalencies here, I leave the Oppression Olympics to other folks! I am only pointing out a general category of people pretending to experience the problems and therefore somehow the lives of other people. 

This has come up recently in discussions about The Fault in Our Stars, a really good movie and an even better book. I think that both are worth the time. And I can enjoy an entertainment product while also understanding that it has a cripface issue. Hell, House, MD helped me through a rough patch in my life when I was newly dealing with using a cane as part of a bigger package of suck that came from a misdiagnosed infarction. Except it was my life and House was crip drag. Frequently patient characters were, too. Yet I was a big fan for years. The new Ironsides was totally cripface no matter how awesome Blair Underwood is in everything he does. I estimate that about 90% of disability I see on major media is fake. Oh, shout outs to Game of Thrones and CSI - you know why you rock.

Yes, it is disability drag when committed by a major motion picture the same as it is one of those empathy stunts. You know the empathy stunt (my phrase, but I would love it to be common use): where someone wears a blindfold for a week or uses a wheelchair for a month and learns valuable lessons. Usually done in service of a good cause, but almost always a bad idea.

Because crip face is still so commonly practiced and accepted, we are mostly just forced to deal with it or never dig anything. I have a lot more to say about the politics and power around cripface, about how you respond to the subject says more about you than about the problem, all kinds of things. There is so little out there, and I want to help fix that. Discussing this is part of the solution to it. Looking at these systems that benefit from disability drag should be something we all do together. Dismantling this problem should not be the sole responsibility of the people victimized by it. 

Avoiding using accurate terminology because you like something or give the creators a pass for being good people is part of the problem. Bad Cripple says, "Stop it. Stop it right now." 

I am in the middle of a medium evil classic lupus flare with some bonus avoidance activation, but I decided to write anyway. Thanks for hanging in there with me. I hope you are free from suffering and the root of all suffering.

Tuesday, June 10, 2014

This Post May Be Crap

This post may be crap. Every post here may be crap. Maybe every once in a while I get to be the millionth monkey and write something not crap. But I know this for sure: every single thing I decide to not write is definitely crap. So, I am going to side-swipe the little hater, the self censor, and work on the assumption that crap happens, that crap happens to me, and it is better to get it out and get one post closer to something good. Right now I am in flare management mode, so what the hell!

PatientC, a middle aged white women with silver/blond hair taking a rare bathroom selfie before a feared massive hair loss that did not occur.

Right after killing sprees and mass shootings may be the hot iron for gun control and gun abolition activists but it is the worst time to try to convince someone that they should give up what they see as their personal defense against such things. These folks sometimes lack the ability to use basic empathy as much as the NRA does (almost all the time). I use the phrase gun abolitionists to simply indicate activists with the goal of eliminating civilian gun ownership, no baggage. I think that control activists would do well to separate themselves from the abolitionists folks if they want to get more done. My heart aches for these folks, today in Oklahoma and who knows where tomorrow - so I want something right, something real, that will help. There is a lot we can do to make the 2nd Amendment a secure right that also respects the rights of others to live without them. But the secessionists, the militia/"states rights" folks, the NRA, the gun abolitionists - they are all going to have to sit at the kiddie table of ideas until they show they can do better.

The Fault in Our Stars is a great movie, you should go see it. You should read the book too. I got into some hot water trying to address the crip face/crip drag issue - but as I said then, if that was all I noticed I would never get to like anything. It is daring to put crippled and dying folks out there, to treat those stories as even worth the telling. Particularly telling tales with disabled/dying kids - we like to pretend they do not even exist. Also please note that Indianapolis is not as white or straight as the movie makers seem to think it is. Overall it is really good and worth the time and almost as brave as the book.

I am over 100 days cigarette free, thanks to vaping eCigs. Which is good, because they found antiphospholipid syndrome and have added that to my list of crap I fight every day. I am glad they found it, it can cause blood clots and kill people, so I would definitely rather know. There is just kind of a shell shocked reaction now a days that comes with new bad news.

(I am trying an app called If That Then This, please pardon duplicate announcements while I get used to it. It could be really useful!)

Wednesday, March 5, 2014

In Case You Noticed

If you have time to fit it into your reading schedule, I suggest this from American Prospect. It is spot on, and can help explain why I talk about certain things the way I do.

I talk about acquiring things, or things brought into my life, but I rarely discuss buying things. One, I rarely actually buy things myself, and I am a sucker for accuracy. I am involved in more purchases than I make myself. It is hard for me to get out, so I am not the retail hound my mall rat early years would warrant.

Two, we live in a surveillance state. I am disabled and poor, so I participate in programs that have made headlines the past couple of years for spotting "fraud" in their programs by monitoring the online lives of folks forced to depend on them. I worry about mentioning that I felt good enough one day to go to a park, for fear that someone will decide that I am jerking the system for fun and profit. 

Since the beginning of the Earned Income Credit, while the rich bitch about their taxes, the working poor have a minor holiday. Bills get paid, folks  that usually use SNAP/EBT can eat a little better for a while, kids get new shoes... the bleeding edge grows a bit of a scab for a while. And you know how it works, the very rich hit the cable channels bitching that the poor are not suffering quite enough. It is so tiring. 

So when I say I was involved in a purchase, you may have to read into that a bit. Or when I say a new thing came into the house, a new thing came into the house, one way or another. But I do not lie to the institutions that help me and mine get by (barely), and I do not lie to you. I simply require a little more reading comprehension. Well, a little bit more than my obtuse way of discussing things needs anyway.

Oh, and not using contractions - that is just me.

Tuesday, January 14, 2014

Bright New Year 2014

A picture of a white woman outside in winter, bundled up in coat, hat, scarf.
PatientC, winter style. 

Ready to start the New Year? Well, the first month of it is almost half over already! What are you going to do with it? That is what I am asking myself, and taking stock of where my ambitions took me last year.

The smoking cessation quest is at an end. I have one or two clove cigarellos (cigarettes) a day, thanks to vaping, eCigs, lots of support, and a lot of willpower. 

This blog turned four, I think. I did better than the previous years regarding getting posts up for your reading pleasure. But I am nowhere near where I want to be. I want to post at least twice a week, that is my goal again for this year. I wrote about a lot of things, and while I think it is important to show that disability is just a way of living and not life itself, I do want to get back to some basics on that front.

I finally invited Buddhism into my life in a more serious way, and that is probably one of the most wise decisions I made this past year. It feels like a natural, right direction for me. The Boyfriend and I attend regular meditation! It is the perfect event for the avoidant girl: get together with folks to sit and be quiet and well, meditate. That makes me giggle, but I am also socializing and learning. I am going to continue to travel down this path this new year.

Weight was a bother. I started the year wasting, so I spent a big part of it eating what I could, when I could, and the more filling the better. When I stopped wasting I put on more weight than I wanted. I am battling social pressures about weight and expectations about weight and disability. I need a solid weight/fitness level that will help see me though not just regular life, but my myriad illnesses/conditions/etc... With better pain management I can move about more, so I have hope that with effort I will be better able to not just manage but own my own form.

I have become a better advocate for myself when dealing with the healthcare community, but I still need some work here. It is so much easier to stand firm for my Minions (daughters) or the Husband than it is for me, and that is problematic.

Speaking of the Minions, things have been hit and miss there. One Minion is doing so much better in school, but the other is having difficulty just getting out the door to attend class. They both need help, and I feel I am just not getting them what they need. Our relationships are shifting to interacting with them as actual folks while also maintaining child/parent relations - it is confusing and frustrating when it is not exciting.

I will talk about all this and more in the upcoming year. I plan on seeing you more often, Gentle Reader!

Thursday, December 19, 2013

Ally Maintenance and Upkeep

There is a really provocative graphic going around about allies lately.  (I am not sure of a source to link, but it was a solid series of tweets about being a QUILTBAG ally. If you have the source, please let me know so I can credit and link, thanks!) It got me thinking about allies and ally-ship. Let me share my brain drippings with you!

I think that allies are part of the community like suburbs are part of the city. They are in the same vague area (say, disability rights) but their experiences are markedly different (by, you know, not actually being disabled) and usually less intense. They both take shit for thinking that disabled folks are full and complete people rather than drains on the system that should have been set on ice flows. One is having their own humanity questioned; while the other is just being told they are wrong, even if it is about something they deeply believe.

I do think that allies of any community should have a safe space... to themselves. They should not intrude on a core community, and most certainly not feel entitled to the core safe spaces, or the time and energy of members of the core community. They should not place themselves above or superior to their core group. But they do have needs that they can support each other to handle. Those needs are not the same as the core folks anyway. Someone being called a racial slur is experiencing something much different than I experience when called a race traitor. We may both need a hand and support, but of vastly different types. Which means that intruding on an oppressed group's safe space is not only a jerk-ass move, but would not give an actual ally what they may need, anyhow.

For anyone reading this with a raised eyebrow or proto-side-eye, I understand. Who the fuck am I, anyway?This is only based on my personal observations as a racial justice ally, an immigration/DREAM ally, an ally to the other folks in LGbt, for starters. Also, I see it a member of the QUILTBAG community, the disability community, a woman, a person of low fixed income et al... I have intersections, and I bet you do too! 

Sometimes it needs to be said that being oppressed and/or being an ally of an oppressed group does not make one exempt from being an asshole. Let me emphasize that real quick: statuses of privilege or lack of it are not indications of being a good person or a bad person. Which is why I mention sincerity. Have it, get it, or get the fuck out of the way. I have been called out when I was wrong and accepted it with what grace I could muster. I have also had someone use oppressed status to power insults and social maneuvers, which I took... with less grace. If you are a minority dealing with an asshole, my advice is to walk away and make your group aware so the asshole blowback is minimized (ewww!). If you are an ally dealing with an asshole that also happens to be oppressed, go somewhere else. Do your research instead and do not assume that the whole group is made of assholes. 

In oppressed communities we bristle at the idea of allies needing support from us. It is not our responsibility, true. I think that they can, and should, support each other. It should be acknowledged that allies can and do have needs and sometimes require social support to avoid burnout and continue the work, share resources, commiserate. Frequently allies do look to the core community for where to go and what to do, which is sometimes simple attention seeking behavior, but it can be a sincere request, too. If someone seems sincere when asking, say, how to get ally fellowship from my militantly bisexual self, I point them at PFLAG or something similar, or in other instances give them good terms to use to Google to get them started if I have the energy to do so for them.

So let us approach each other with mutual respect and care.  I am not claiming a special insight here - most folks have an oppression and in some other way benefit from the oppression of others (even if we would rather not). We each have to decide what to do here ourselves, and respect that right even if we disagree. I will not sacrifice my own peace of mind or self care to lead someone that is ostensibly supporting me, nor should I or anyone else be expected to do so. If I can, I will. Allies are people, people trying to do right even though they could go through life not giving a damn. If I suspect sincerity, I will always at least point them in the right direction. There is not a group I belong to that could not use another good ally. 

Have something to add? Read my comment policy and then start typing if you can respect it and me.

Friday, December 6, 2013

Dear Madiba

Dear Madiba,

You did not know me, Nelson Mandela, but I knew you. In the small white Indiana town I grew up in, there was little talk of racial equality. My mother spoke of it, and brought books and movies into our tiny home that supported such causes. Even with everything that happened to us and between us, that is one of the few things for which I thank her.

But I remember you. South Africa's campaign for equality somehow made it into my life, and my heart wrapped itself around you and your cause in a way I had never felt before. I was a young teen, and I had just been introduced to the Civil Rights Movement of the 1960's here. What was going on in South Africa to blacks and allies chilled my young bones. But there you were, resilient, an advocate for peaceful resistance after using violence. 

You lived! Although you were jailed when I first heard your name, you were alive! Here in the US, our most successful advocates for equality and peace were laid low by the tyranny of white supremacy - it's lackeys using death as their political tool. Violence, prison, slavery, TB: none of it had taken your life or your principles.

In four short years you went from 46664 to Mr. President, ushering in not just a new country, but a new era. You and your movement showed us that peace could be made under any circumstances. It took incredible fortitude and forgiveness, but equality and peace could be born in the shadow of an apartheid nation. You did not do it alone, to be sure, but your strength and serenity were the midwife for this incredible birth.

Even in all your greatness, and your Presidency, and your Nobel Peace Prize, there was more. You remained human, even as we tried to deify you. 

Your quest for peace and justice reached far beyond South Africa. Even in a town that had only recently stopped allowing Klan rallies at the courthouse, your presence reached even there and touched kids like me. For that I could never give adequate thanks, but I do thank you. You and your country was the first cause for many advocates and activists. You lit our hearts and moved our hands and for many of us, even as our causes changed, never stopped.

Thank you, Madiba, may you know whatever peace you dreamed would be waiting for you.

Peace and love,


Thursday, December 5, 2013

Disability and Fitness

or: How Fit Can a Cripple Get?

This year I had four goals to work on, and have made sufficient progress on two of them. So maybe I can only work on two life altering goals at a time. That is still pretty good, I think. Fitness was one that I failed miserably this year, and I cannot really afford that kind of mistake. You know?

I have successfully completed exercise programs before I was super sick, but was on the sick track and was not aware that all the little things were going to add up to big, systemic, life altering problems. It was hard, and I had failed at some before and since, but all the adults in the household were on the same workout bandwagon that one good time, and that helped a ginormous amount.

The pillars of fitness are more like spinning plates for sick folks like me. Figuring out what you need to work on can involve consulting with multiple doctors and maybe a physical/occupational therapist or two. I cannot afford to do exercises that may help one thing but make another worse. Habit is nearly impossible because one never knows when a flare is coming on, how long it will last, if a flare is coming on will activity activate it? Some flares you can still get some things done, but some flares are incapacitating. All of this can make progression nearly impossible. 

Caring about my health is a no brainer when I spend my days trying to piece together enough strands of healthiness to get by each day. I find that I am much more aware and connected to how my body is doing every day that non-sick/able-bodied folks. They seem to be able to get through a day without checking in with their bodies and their health. Hell, I have to check each day to see if I have a doctor appointment!

How do I even measure fitness in this physical miasma? Will having stronger, tones muscles give me the type of health I will need to fight my health issues as I age? Heart healthiness always sees good, but sometimes stairs wind me and bad balance days can make a simple, one story staircase a nightmare of risk and cost benefit analysis. Well, I am going to start at just trying to do something and go from there.

So, as you can see, returning to a good level of fitness is not going to be an easy task. I am doing what I can to remove obstacles I have put in my own way, like smoking and a sense of futility. But I think it is going to take a lot more than that. Getting more fit is going to be one of the things on my New Year's resolutions. Again. But I think I have a better shot at it this time. Hell, my smoking is... well, I will tell you about my smoking here soon. Last year's list is going out 2 for 4, so I call my odds pretty good, maybe even... even. 

Monday, December 2, 2013

Our Poly Family

One of the things I want to do with PatientC that is not medical or disability related is to get more material out here that is about real life poly families by talking about mine. I was asked some questions to help with a friend's paper, and that got me thinking. You know what happens when I get thinking, I post it here for your potential cerebral pleasure!

Answers to questions asked for a friends’ paper on poly families:

  • Okay, that is some list! But it does look like a very good place to get started, good job there. =) I may use what I write here as the skeleton for a blog post unless that would weird you out. I think my responses are in order, but I may have missed some {questions} - if anything does not seem to synch up, feel free to ask for clarification.
  • Yes, as far as the Minions go, we have always been this way. The only change was when we all moved in together.
  • They have always known {we were a poly family. Well, at least since they could understand words like that}. Now, if you are asking when did they figure out when we were "romantic" by a more complete definition of that word than you have when you are three, probably a year or {few} after we started living together, so 8 years ago, maybe? They would have been 9 and 7, I think.
  • I raised them with the idea that although most adults are taught they can only romantically love one other person at a time, I practiced a romantic love that was like my family love. They both knew that I love them completely but differently, and that was how I felt about their Dad and the Boyfriend. Now, when that idea was challenged at school One came home saying "Mary's mom says you cannot have a husband and a boyfriend at the same time." I said, "Well, tell Mary to tell her mom that indeed I do and she is a close minded bitch!" Then we all laughed and I delved more into definitional polyamory to help them explain to what friends they decided were able to handle it.
  • They {my girls, otherwise known as The Minions} seem mostly nonplussed. They do use it as a litmus test to see if a friend is going to hang around after they find out, I suspect. One has stated that she will probably not be poly, that love seems complicated enough to her right now. Not that she was judging us, she wanted us to understand. =) Two is a little more militant.
  • Yep, we are who we are wherever we go and whoever we meet (representatives of the state being the exception {and we tone it down a bit at school functions}). We will usually wait to see if a neighbor is staying or if we like a new group well enough to hang around and need to explain if it is not plain at the start.
  • For the most part, they {our neighbors} do not seem to care. If they disapprove, they keep it to themselves. Some of our neighbors thought it odd at first, but they are mostly older black matriarchs that care more about our kids and our yard being well tended than what we do in bed. We joke that we are those "crazy crackers on the corner" and get along pretty well, now that I think about it.
  • No, they {the Minions} seem to have a fairly easy time of that. They have been teased and rejected for not being Christian. Hey, that may explain it: the people that would judge their poly family are already blown off on the religious question and never get as far as their poly family. And family structures were already becoming more fluid before the economic downturn, now everyone has extended family living with them or broken up partners still living together... I am not saying that the nuclear family is dead, but it has been coughing up blood as far as I can personally tell.
  • We are all supportive of the Minions. G and I, other than a six month break at one point (long story), have been together for over twenty years and he has always been an accessible Dad. {The Boyfriend} and I started our odd journey right before I was pregnant with {the eldest}, so he has always been around for them. One of the perks of ploy is that the girls always have a grownup around. And one of us almost always finds a way to relate to whatever they may be going through at any given time. While not being able to sign things for them or stuff like that, {the Boyfriend} has always been "an adult that should be respected and listened to like Mom and Dad." 
  • No, {on me being open and poly} I have not seen anyone {else} seriously for years. Being sick complicated that issue so I do not know if I would have otherwise. But they would have needed to be cool with my home life and my home life would have needed to be cool with them if it was serious. I have had sex with a friend or two, but with no eye to changing standing relationships.
  • Umm, hopefully that is a good start. Whatever strikes your fancy to ask about or discuss is okay so far, so feel free! {Same goes for you, Dear Reader, feel free to chat below!}