Rationed Health Care Will Kill Me

Dear Reader, let us just wade right in here. Recently you may have heard a term new to most: rationed health care (RHC). What is it? It is the medical community's response to running out of doctors, equipment, or even human organs. It is fascism and bigotry that most USians can either ignore or give their tacit approval. I know that the title above may seem to be overly ripe click bait, but the truth is more murky than your local lab coat may be willing to admit.

Nissi, a black pittie, looking sadly at the camera. 

Here in the early spring of 2020, the spread of a novel corona virus is infecting people with Covid19. While less ambitious than the Black Plague, it is currently associated with a 2-5% fatality rate, with that rate increasing dramatically for those that have managed to kick around on this dirtball longer than most, those making the best of life with other conditions like diabetes, cancer, or other chronic conditions. The best data on US standards prior to Covid19 can be found in the Uniform Anatomical Gift Act, a non binding document adopted state by state (sometimes with changes.)

The argument goes that first come first serve is UNFAIR in a medical crisis. I watched a nurse, in real time, talk as though saying that some jaggoff with young kids is more deserving of medical supplies and effort than a grandma with a poor pancreas. His youth and status as someone that could mash their meat against someone else's meat enough to make yet more meat makes him more worthy of LIFE ITSELF. Is that how you want your Granny to leave this Earth?  Do you think that would be fair to her and her family?

This problem is not a surprise. We knew we had too few ventilators, too few beds, too few caregivers. The Obama Administration knew, and told this clown car known as the Trump Administration. The WHO knew, Bill Gates knew, all credible sources that looked at the problem knew. They knew that we would need to ration care during a health emergency like this one and our powers that be DO NOTHING. DID NOTHING. And as soon as the public looks away, they will go right back to it unless something changes. 

At the center of this disaster is negligence at both the corporate and governmental level. Profit making hospitals have to ration their money into the features of a hospital that can generate profit. That profit comes from you, the patient, the taxpayer and goes to the very top of their corporate chain. It does not go to new buildings to provide more health care to the less privileged making them also under-served. It does not go to buying equipment that may only get used in an emergency. And the US government allowed it.

I am not knocking an individual person here. Nor do I have a chance in this fight - if infected, I am likely to die at home long before I would give consent to be taken to a hospital in this pandemic. My crippled immune system would make me more likely to get sick from the germs in an ER, and the stress would cause a flare that would go unattended by most staff even in the best of times. Even if I were to go to an ER for something else, Covid19, germs, worn out & stressed staff not able to pay attention to special needs cases, and my body's stress response means I would die of one or the other. So I have made the decision to stay home, to die at home if it comes to that: surrounded by those that can care for me, that care about me, in however much peace and comfort we can muster. 

Individuals run from the responsibility of their own decisions by hiding as a cog in a machine, just a representative for a corporation they barely understand, let along control. Modern doctors do not stand up for the poor like they should. As of yesterday, apparently this country realized that black and brown folk are 70% of Covid19 deaths. This is the result of a chain of inequity of which the hospitals were the last link of the chain. THIS IS ALSO THE RESULT OF RATIONED CARE. You can disagree with my earlier statement about bigotry in RHC, but the truth is in thousands of dead black and brown bodies.

There is no fairness in a plague. There is no fairness in a hospital where infection floats from room to room on garb that has not been changed or  sterilized. There is no fairness in death. None. First come first served has the benefit of being something that we do see as fair in other circumstances. It also has the benefit of rewarding those that took action early. We can do better. We can make sure that we need to ration less the next time, and the time after that. 

You are welcome to do your own research, (find out how much your own life is worth, you may be surprised.) I did before I ranted above. Much love to health care workers in general and ALL those workers that make sure we can live though this: from green grocers to ER nurses to delivery drivers to electricians. You are seen, needed, and awesome. 

Handbook for the Recently Disabled, Part I

Finding yourself recently disabled? Gimpy? Crippled? Love someone recently removed from the ranks of the TAB (temporarily able bodied)? Well, you have come to the right place, Dear Reader. Here are some practical bits of lived in situations for yours truly!

The Handbook for the Recently Disabled will show up sometimes, with a handful of bite-sized pieces of advice I wish I knew or have observed along the way. YMMV (your milage may vary), of course. I am not a medical professional in any way.

First, enjoy this picture of Lucky, a tiny, tawny chi-wowow.

First off, no one is actually allowed to call you a cripple and be seen as a reasonable adult in the US. You can call yourself whatever you want. I frequently use words like that to refer to myself because language is a tool I wield wildly.

Remember to get your disability parking! Indiana gives out both plates and tags, but you need documentation from your doctor that you need it. It comes in two flavors: 6 months and No Expy. So check with your BMV or doc to find out what you need to do if you qualify. I needed proof from my doc, so folks that think you can fake it need to know the following: faking is more complicated than parking - why bother? Not like you will get to use a special spot anyway, read on!

Third, remember when you go out of the house this hard learned lesson: there is never enough handicapped parking. The days you need it the most, those paltry places are never sufficient. No, it is not worth it to get into a conflict with a person that appears to be parked illegally - if they gave a damn they would not have parked there in the first place. You have no authority, most shops and stores will not make someone move, and you are already having a hard time getting around - do not waste your efforts on assholes.

Everything has changed. Maybe you just need a cane, maybe you can only move your eyelashes, I have no way of knowing, Dear Reader. The newly disabled, me and some of mine included, found ourselves reevaluating every movement of every day. Spoon theory sums this up incredibly well. Figure out what you must do, what you need to do, what you desire to do and prioritize as you see fit. 

Lastly for this piece: know your help. For me, help came mostly from family and a few close friends. Be honest with yourself about who you can really lean on and trust with your health, your emotional well being, and your business. Depending on your life and people, you may place a lot on a few or try to spread it out depending on the strengths of your folks or your trust. Some folks will let you down, be prepared. But be ready to be amazed, surprised, humbled, and deeply gratified, too. Folks will surprise you: users will disappear in puffs of jerk-shaped smoke, and some will leave you wondering how on earth you earned that kind of dedication and love.

PatientC Lives!

It may be news to you, but PatientC still lives. Yes, yet another "get blogging again" effort shows fruit, so let us get fruity!

A tuxedo "pit bull" puppy with a content, silver haired PatientC.

In recent times I have been writing again, and thinking of you, Dear Reader. I finally decided that it should be up to you whether or not you expose yourself to my various news, ideas, and brain drippings. I will share what I want to share, and you can read what you want to read. Consent is a great thing!

Some family, some Family, friends, and associates will now read this, so I have to give this caveat: while I appreciate your attention, please understand that I have to write as if you will never see this space. That does not absolve me from hurt feelings, misunderstandings or other results of us meeting here, it just means that we will have to deal with them together, if you want to deal with them at all. 

Life was in a weird place for a while: I am getting around better, sleeping better, loving more demonstrably, being there, and doing some things more. This has a lot to do with the love and support I have at home, with dealing with ailments and problems more clearly, celebrating victories honestly, and with managing the pain that interfered in every aspect of that life.

The past year saw me lose 50 lbs (because I can move again!), be there for my family (they were the ones in and out of the hospital this time, how weird!), get a dog (Nissi!), and commit myself to learning more about Buddhism even if my attendance at meditation practice has been spotty.

I intend to resume a lot of my regular features: Gimpy Gamer, Buddhism, social justice, disability, Things That Make My Life Easier, reviews, sex - most anything I can hold in my head long enough to get it to you. This means updating most of the whole damn blog, so changes ahead!

Bright New Year 2014

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!

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. 

Outing Invisible Disablilities

As you well know, Gentle Reader, not every disability is visible to the untrained, naked eye. You know that most of what contributes to my state of disability is invisible unless I use an aid to help myself get around. I get a lot of hairy eyeballs if I use disability parking or other help from folks that think disability is a state for them to judge themselves, based only on what they see in one moment.

Well, someone in Portland calling themselves "Artemis of the wild" has gone further. Reported by the Oregonian via Gawker, this pusillanimous fuckwit has decided that folks receiving disability and have the audacity to vote should be unveiled publicly. For the sake of your sanity, do not read the comments for either article. 

I could count the ways that this is screwed up, but you and I, Gentle Reader, have things to do and lives to live. Keeping that in mind, let us take a brief tour of a few of the worst bits.

• People are not one issue voters.
• You cannot see a whole host of mental and physical disabilities. Just get fucking used to that.
• Voting is a right and a privilege of US citizenship, even if the far right is trying to take it away. Disability, even if you get those meager benefits, does not in any way strip a person of citizenship or any other status besides "temporarily able bodied" (also: TAB).

You do not get to decide who is disabled and who is faking it. If they have run the disability-approval gauntlet (and it is pretty horrible for some) and did the song and dance to get their status validated by the Social Security Administration to receive aid, or even just their doc's office to get a parking pass then they have already proved to anyone that matters that they qualified. You need to back the hell off. They are already handling enough extra difficulty being disabled and all. 

There are only a few people disabled folk are required to give their status to, and it is not you, Jackass of the suburbs.

Dear "Artemis of the wild,"

I am disabled. I vote. I do not cast my votes solely on the basis of favoritism of disability status (if I did, there is almost no such thing).

I still count.

Fuck you.

Sincerely,

PatientC

PatientC smoking a clove cig against a fiery background.

"Solidarity Is For White Women"

This post assumes that you have a least seen some mention of #SolidarityIsForWhiteWomen and skips some 101 ideas. I am not much of an online presence, but I want to do something useful, something purposeful,  contribute something good. I will talk a little about my own opinions, but that is not my focus. What follows are pointers to some really good work you may not have seen: work by folks involved, works by women of color, works that give background. 

If you have found or produced something I should link here, please let me know below. My spoons are limited, and there is a lot of stuff out there about this. If you are here, reading me, then you probably already know that it can be rough for women on the internet.

The key person you should know about in all of this is brownfemipower. This was not her first rodeo, as it were, and her fortitude and class is amazing. Flavia Tamara is another writer I have admired from afar, when she was writing (wrote? Not sure what is up at TB) for Tiger Beatdown. BlackAmazon is on Twitter and so is Jamilah Lemieux, writers I have seen and respected but was not following 'til recently.

Speaking of terrific women, go to this great article from the Guardian, written by Mikki Kendal, that sums up a lot of what was going on around this hashtag. #SolidarityIsForWhiteWomen is her doing, and I congratulate her for it and thank her for the hard work of dealing with the fallout. You can also see her in this interview, where she mentions the erasure of intersectional activists that are disabled, "lower" class/poor, non-Western... you get the idea.

Jamie Nesbitt Gordon wrote about this for Salon. This Week In Blackness talks about it here. Angry Black Lady had already rightfully and righteously gone to town on the sexist. This is another good piece (I have met and like the authoress). Also left out were feminist disability folks, feminist QUILTBAG folks, poor feminists... you get the picture. Gradient Lair has a terrific piece up that highlights the voices of of the people harmed in all of this. 

Student Activism has a whole lot on Schwyzer, but I will just point out one article  It has enough links that also have links to give you a good rundown on the man's career of upsetting folks. AJ's The Stream has a solid piece up.

The HG meltdown is captured on a "Men's Rights" page, but you can Google the pdf if you want to do so. I make it a general policy to not link to MRA sites. No, I have no idea why MRAs would even care, except maybe to celebrate the pain of women, particularly feminists. These guys are the mustache-twirling villains of the equal rights set. 

Feministing attempted to apologize and explain their position here and in a less triggery way here. Both of those links have long comment sections, (and in this rare case on the Internet) I believe you should read the comments. The efforts met with mixed results. There is some doubt as to whether this was motivated by honesty or capitalism. In the places I have linked, you will see opinions vary. I am giving credibility the women that were right about everything in the first place. 

If we are going to take feminism and make sure that it is for everyone, then we are going to have to look at white power in feminism. Yes, I include me in that we. That societal power is given to every white, yes - that is undeniable. HG could not have gotten away with any of this had he not been male, straight, and most of all: white. During his career numerous women of color called out his bad behavior only to be ignored and or discredited and further marginalized. They were right, but they were silenced.

One of the best things I have read about intersectionality in real life: My Feminism Will Be Intersectional or It Will Be Bullshit. 

Note: not every link is an endorsement. Some may contain good information, but be otherwise problematic. Be careful out there.

EDIT: spelling fix at post.

The Fault In Our Stars

I am able to do some odds and ends around the house today, so I give to you my Goodreads review of #TFioS as a meager offering. It feels good to post more often, and I am doing my best to do just that as I can. I want to delve further into this book regarding disability, chronic pain and other issues here soon. Right now we are still passing it around at home and starting some really good discussions together.


The Fault in Our Stars by John Green
My rating: 5 of 5 stars

Thank you, John Green for a great book, and a piece that my daughters and my menfolk and I could all share. Thank you for the community and other efforts you and your's maintain and nurture.

As I was reading TFiOS, I could have sworn that a Spoonie wrote it. I could have sworn that the author must have personally experienced certain health events to have written them so well. Some of the specifics of being chronically ill, of disability, of unrelenting physical suffering are very well described - along with the emotional, familial, and social baggage it can bring. Unlike most works that deal with these issues, this is not made the center of the universe of the characters, which is a welcome uniqueness.

I recommend The Fault in Our Stars highly, but to enumerate why would be to take apart something you should be able to enjoy whole first.

So far, half of the Family here has read it and we all are very taken with it. It has sparked ongoing talks about exactly what constitutes Young Adult fiction - in a content sense, not in a subject sense. What happens to the characters in here happens to kids, and it is handled in what feels like a very real, honest way.

We will discuss this book here at home for a long time, I think, and that is a great thing.

Note: this was written on a brain fog day. Please pardon the irony of a review that is itself so poorly written for a book that is so well formed.


View all my reviews

SSI: Not Enough for Rent

I already had an article ready for today, and then this showed up in my Inbox:

Study Finds Average Rent Cost Higher Than Entire Monthly SSI Payment of Many with Disabilities via Disability.Gov.

So guess what I want to talk about! You got it...
Please feel free to take a moment to recover from the shock that SSI payments are just not enough to live on. Are you okay? Want a drink? A towel? A fainting couch?

There was recently a cost of living increase, by the way. Heh.

Besides finding some clever ways to say “fucking duh,” I really do not have anything to add to the facts of the matter. Well, I will say that it does parallel my lived experience.


It is difficult to complain when I feel damn lucky just to have the system to work at all for me.

Politics matter: you need to remember this when you hear that the Administration has put SSI back on the table as a gambling chip. You need to remember this instead of calling the people against it “emo progs.” You need to remember this when you visit your relatives trying to live a life on money that is not even rent. You need to remember this when the language of “makers and takers” gets louder again (and it will).

You need to remember that we are part of the 47%. We did not want to be here. We did not get here on our own. We did not decide to injure or sicken ourselves so much so that we could get a check that would not even cover basics.

This leaves us no room to do or be anything other than disabled.

Remember us.

Have You Seen Me Lately?

Yes, I am trying to be back here more often. This is a quick note to let you I had a good time hanging out with Rodimus Prime and SayDatAgain on their show, The Black Guy Who Tips. We talked about me and disability, about being pervy and poly - it was one of the better conversations I have enjoyed lately.

You can, and should go see it here: Spreecast, iTunes. You are missing out if you do not!

I was really happy with how Rod and Karen interviewed, they have a good touch on the ebb and flow of a conversation - a lot people really struggle with that, but not these folks. They talked about the topics with curiosity, some study (wow, rare, thanks, hurrah!), and an overall respect that made me feel really comfortable for the hour we talked! I hope that they feel I respected their home turf and treated it well.

Again, I apologize for not being able to hang out after, I had to get some sleep (I had not before the show, Rod knows what I am talking about!). I listened later and it was all fun!

(I tested these links, but my cache may keep me from seeing some errors. Let me know if you have any issues!)

What Do I Do? What Do I Want?

Recently I have been thinking about my blog here. What do I really want out of my blog, what do I want to put into it, and what on earth do I think I will get out of it? Please note: this is not some sort of blogging goodbye, I am analyzing what I am doing on a number of fronts.

One of the first side effects I noticed when I became (or finally realized I was) disabled was a serious disconnect from the world around me. I had not opted out of participating in the world, but very few things were aimed at including or even caring about me and this new-to-me group I found myself in! Unless I wanted a Jazzy or a Rascal I was pretty much left out. I already experienced this as a woman, as a poor person, as a poly person, and a bisexual (unless you are a bi woman having sex with other "bi" women for the purpose of turning on straight men, being bisexual is often considered indecision or greed rather than an actual sexual orientation). In most of life's genres I am relegated to a background player, or just ignored. I do have relative privilege and I try to live my life with that understanding.

My response to being discarded and feeling disconnected was to become hyper-connected. I went from not caring about most television programming to having the news on almost all the time. I started spending more of my time on line following news, pop culture, and finally connecting my interest in politics and social justice to the modern Internet. I found that if I saw a news story a couple of times I had a much better chance of retaining it and being able to discuss it with someone else.

As the scope of the issues and problems regarding USian society and culture about disability became clearer to me and I started to understand that it was right up there with other great societal poisons, I began to understand that I wanted to be part of the solution. I wanted (and still want) to take some of the things that happened to me along the way and use them to help other people. I want to take the horrible things that happened and give them to you so you can either avoid them yourself or better understand someone else in your life that has experienced similar things. So here I am.

Seeing is Expensive OR OneSight

Wearing eyeglasses can be a tough gig. A lot of insurance coverage either does not cover visual, or barely covers it at all. Of course, while you can spend an absolute ton of money on a pair of eyeglasses, even cheap ones are prohibitively expensive if you are poor. In Indiana, it costs anywhere from $100-$200 to get an exam, lenses, and frames.

Going without glasses causes  obvious problems. Wearing old glasses can wreck havoc with your health and comfort if your eyes have changed significantly since you wore them. This can cause migraine like symptoms in some. In general I have never known a person that needed to do this that did not have headaches of varying degrees that did not relent while they wore their old glasses. That was a messed up sentence, but I trust that you understand what I wrote there.

The cost and logistics (multiple trips, hours that are one's working hours,  gas or public transit twice) along the the shitty "coverage" if you can even get that; all these things make glasses really hard to get once you live at a certain income (or lack of it) bracket. Groups, charities, and other organizations that help people get glasses do a tremendous service. I have written here before about how you can help by donating your own old or extra pairs to help the cause.

A few weeks ago, I went with the Boyfriend to a local Lenscrafters, as he needed new glasses. While we were there I picked up a brochure for OneSight, an organization that brings eyeglasses to those in need. Unfortunately, you cannot just go in with whatever proof you have for your lack of income, you need to be referred. But the program looks great, and works both internationally and domestically (US). They are also one of the programs that will take your old glasses, too!

I think OneSight does good work, and I wanted to pass the word along. Do you know of other groups and/or efforts? Please share them below!

Get Out and Vote!

I do not need to tell you that I am adamant about getting out the vote. Even if I do not agree with how you will vote, I think you should get out there and exercise your Constitutional right and obligation to vote.

Check out your state's voting rules and regulations at your Secretary of State's web page. Indiana voters can go here.  Here is some more Indiana information.

You can find information about voting with disabilities there, and you can find more voting with disability information here.

Know your polling place, and know your ID rules.

Are the rights of LGBT citizens on your ballot? Find out!

Check out Actually... if you need more motivation to vote. Here are some motivational voting posters that kick ass.

Here is the Planned Parenthood voting guide. Here is the ACLU's guide. Bold Progressives/MoveOn put together a guide too. You can find your polling place here.

If you have trouble voting, then immediately contact Election Protection, either via their web page or by calling their number: 1.866.OUR.VOTE. The ACLU Voter Protection Hotline is: 877.523.2792.

Remember that people have fought and died so that you can cast a ballot: DO IT! I am in a flare, but I had my husband bundle me up so I got to my polling place, which will likely still be only barely was actually handicapped accessible, and cast my damn ballot, you can too!

Every Day is Hallow... Aww, You Get It!

I love Halloween. Every day is Halloween! I have been a horror hound since I can remember. I fell asleep at the drive-in during An American Werewolf in London, and then had nightmares about the undead Nazi attack. 

(I know it is All Saints Day, but I was pretty sure that if I made two posts in one day that the fabric of my universe would fall apart... So enjoy this with your hangover. Or not, you be you.)

The annual ritual of walking to the VHS rental place for the best of what it had to offer around this time of year was always awesome. This was back when a single, new-ish release would run you about $80, so everybody rented. Only the Star Trek movies were important enough at my place to actually own. Everything else around the house was from the brand new bargain bins of tapes, where we could find the occasional old sci-fi treasure or a Roger Corman classic. The Terror with Boris Karloff and Jack Nicholson - we had it. We also had Nicholson in Little Shop of Horrors, he was the dentist's "masochistic" patient. It was a bit part, but I am pretty sure the reason the movie lived on...

I remember the first time I watched Michael Jackson's Thriller, I watched it as a John Landis short, because there were almost no black people on MTV until then, 1983. The Landis/Jackson dispute over rights was finally settled this last August. Thriller is one of those amazing mixings of genres that elevates both to something new and different. Without Thriller, there is no Dragula. 

Wave hello to the grandfather of horror there at the end, Vincent Price!

For years, our mom made us dress as "hobos" (I know, I know) because our great-grandmother liked the costume. The Minions go-to costumes are, of course, vampires, because there is no shortage of white makeup and cheap velvet around here. 

You know what, I can come up with maybe twenty or so decent costumes that include, involve or even mimic disability. Sigh. 

Gun Culture and Privilege

(This is kind of rambling. I apologize. I am swimming through a mess of fog and phlegm with suspected strep throat. Read or disregard at your leisure.)

Wow, gun culture is some taking some swats lately. Some deserved, some not. I do want to say that I do not know a single gun owner that is an NRA member or has two nice words to say about that organization. I know they are out there, let me tell you about my last gun show. I do not really feel bugged by these swats, because I know I am not their target. I only worry that others will think that it is me.

I carry because I am a crippled lady that simply is not able to physically defend against even the average foe. I carried when able bodied because I was a woman driving on highways and country roads at night alone. I have carried because my personal defense is my personal responsibility. My self defense is my own civic responsibility.

And you know what? At the range, practicing to end a life if necessary, I can honestly tell you that 100% of the time I am imagining a white person at the other end of my barrel. Usually a man, but there have been a couple of women in my life that have altered that for brief periods of time.

I mentioned because it keeps sticking in my head. One of the reasons that people fight the idea of privilege is that if you are a woman, or poor, or disabled, or LGBTQIA - it is hard to feel it like the people telling you about privilege want you to feel it. They will point up the hierarchy and say that's who you want to talk to if you want privilege.

This is because there is a funny thing about whiteness: it seems that it must have something to destroy. The days of open colonialism are rapidly closing in favor of "nation building" and "fighting them over there." But our dirty little secret is that in the absence of non-white folk to destroy, in any single or combination of physically, economically, spiritually, mentally; we destroy ourselves. There is no greater cannibal in history than whiteness.

Without a state of non-whiteness to unite against, whiteness turns in and eats itself: the disabled, the non-straight, the poor, the non-Christian, the non-Western, even the non-male get consumed and suppressed. And so, it becomes difficult to explain to a poor, USian, disabled, Wiccan, trans* lesbian that she has white privilege. Because Whiteness, as an entity, only includes her among it's ranks against some Other.

She does have privilege, and it does matter; all of her other states matter too.

I think we need a new vocabulary, one that that can talk about privilege without stigma. One that can acknowledge oppression without pity. A new language, or a new attitude about language needs to be born. Soon. I thought #Occupy would birth it, but it seems not. But maybe something will come after #Occupy, or inspired by - I do not know. But I think it will play it's part. I think we are still building those bridges, and it feels like we are approaching some sort of apex.

Dear Ann Romney

Dear Ann Romney,


Hello! Recently you have been out in the public telling folks that you understand the struggles of women. Women in America that are not you.That you love the mother that has no choice but to work. Your quote does not seem any better in context. And yet, in your national tour, you still do not understand me.


You and me, we have some things in common. We are both women in America. We both suffer the indignities of living in a culture that is still short of valuing either of us as equals. We are both mothers in a culture that does not value the work of raising our young.


We have less in common than you think.


As a disabled mother, the culture questions whether or not I can be a good mother, or should even try. Disabled women are still, to this day, sterilized against their will, or forced to give up their children for adoption. We are often forced to prove that we will be adequate mothers.


As a poor mother, I am blamed for my poverty and told I was irresponsible to even have children. And no, you cannot understand how it feels to have the water shut off as you are drawing a bath for your baby, and wondering if you should skip the bath and save the water for making formula in case you cannot get your water access back. It was not as if I decided I would be a poor mom raising poor babies. That is not how it happens. You have not ever dealt with the indignatities of seeking out help, nor then tied to hide the fact that you are getting help from everyone else. Nor have you dis-invited someone from your home because in his fevered mind it was okay to sit in your living room and rant about welfare queens!


As a white mother, you, I and our children are granted privileges by society. But are you agonizing over making sure your children truly understood the consequences of race in America? Do you deliberately live in a non-white neighborhood so your children will be better adjusted regarding race than you were? Are you constantly working with them so that they are not more white blights on this society and culture?


As the mother of daughters, it is imperative that I teach my girls how to interact with a world that is hostile to them by default. They have to know how to recognize and deal with sexism when they see it. They need to know how our culture treats rape and rape victims. Do your kids need this armor?


As a bisexual mother, I am acutely aware of the bigotry that LGBTQAI kids face in their day to day lives. Mrs. Romney, do you ever wonder if your kids are going to get beaten over who they may love? Maybe you may share a few of my concerns as a poly mother, given your church's history on marriage. Hell, often people mistake polyamory for polygamy although one is simply uncommon, the other illegal.


You do not know what it is like for the state to screw with you month to month on how much medical care, food, or straight up cash you need to live. But you will tell people that it is too much. Living off of investment dividends is not the same thing. Just stop that ignorant nonsense.


We are what we are. There is no inherent shame in being born well to do and continuing with your well to do life. When you say that your experiences parallel the experiences of others you have never even truly seen, let alone spoken to - you are lying. And there is shame in that.


I do not know you or your life, and I do not claim to know. You, however, gleefully act like you are intimately familiar with my life, and I want you to back the hell off of it. 


Most sincerely,


PatientC

Gimpy Gamer: Leela

Does a meditation game really work?

I just played Deepak Chopra's Leela on an XBox 360 Kinect And I think it works.

Leela is kind of a experiment, in my view, an attempt to game-ify meditation practices. There are sections that are more active, Play, and more introspective, Reflect. Completing levels unlocks new ones, and the ones completed become deeper upon replay.


The active parts of the game focus on isolated body movements in Movements and then combined movements in Sequence. Minion One made fun of my hip wiggling, but that was alright. 

One of the only problems with the game is that if the Kinect loses track of you, the game does not recognize it. When I started Stillness I had to grab my mat and cushions, and then the game bugged a bit, losing me and not giving me control hands on the screen to choose the next section. So I bumped out and restarted the game...

The Kinect/XBox menus only intrude at the storage device menu. Otherwise the game creates and sustains a very peaceful, but focused mood. I have duplicated the menu choices here for you so you can get a good look before you decide whether or not to play. I think it is a success, and it my hope to get it out and play it a couple of times a week. 

Oh, and on a personal note: I found it easier to get the family to respect meditation time and space if I take over the living room to do it and there are visuals and sound. Something that they could see and hear that delineated a personal time and space bubble. That may have something to do with having greater success.


The game has gentle, spoken guidance from Chopra himself. There is also a female voice that is equally effective. The reminders and help are sometimes a little creepy in their prescience. By that I mean that shortly after my shoulders had started to slump at one point, I think, I heard a reminder to keep them natural and correct.


(Notes on access and ability follow below game sections.)

~~~

Main:

Play, Reflect, Options

Note: there is often a Learn option which will repeat to you whatever instructions were needed the first time through.

Play: 

Movements, Sequence, Mandala (which you can share on Facebook)

Movements:

Origin, Life, Power, Love, Harmony, Intuition, Unity

Sequence:

Basic, Foundation, Heart, Ethereal, Wholeness, Guru, Leela

Reflect:

Stillness, Oracle, Ambient

Stillness:

Guided Meditation, Breath Practice, Silent Meditation

Guided Meditation:

Begin, Flow, Energize, Open, Connect, Vision, Be

~~~


Gimpy Access: 


Obviously, a completely able bodied gamer is going to get the most out of this game. However, as long as you have some limb use you can use LeeLa. If you cannot stand, you can still enjoy and use the half of the game labeled Reflect for meditation. 


Some folks with chronic muscle/joint pain may find the Play section eases that for a short while - it does for me, at times. Although, you have to be at a certain ability level to even try to get that relief...


Controller use is limited to the standard choosing a profile and saved game destination.


The game is captioned. 


Overall, this is one of the more accessible XBox 360 Kinect games I have played.


If I have missed an access point, please let me know and I will address it as best I can!

Poverty and Rand

The following contains my ramblings on some posts elsewhere about Ayn Rand, her views on poverty, and particularly how her ideological followers (whether they call themselves Objectivists, Randians or not) view and treat poverty. I have edited these slightly to make them make sense on their own, and for some grammar errors, or for clarification. Additions will be marked {thus}.

If you want to see a simulation of how an Objectivist society would go down, play Bioshock.

Enjoy!

~~~

When I first read (Ayn) Rand as a teenager, I loved her "perusing your own skills/ideals/whatnot to your own perfection" world view, but even then had trouble with her economics. As an adult, I do think there are things in her writing worth considering. My enormous trouble with her comes not from the fact that she has a economic ideology that I vehemently disagree with, but from what she does with it and how she expresses it. She had a fanatical hatred for the poor, calling them parasites and insisting that the world would be better off if they were removed from it (not lifted out of poverty by opportunity). That is more than a simply economic philosophy. She had a pathology about it. The irony is that when in dire straits herself she made use of the same safety net that she pontificated so loudly against.

And do not get me started on her Objectivist followers, they are such a hot mess it would take days to spell out everything wrong with their stances.

~~~

{On hating someone for being poor and apparently slothful.} Okay, but does that make any sense, either? Hating someone for something like that? And the very idea "people who were happy to remain poor" is bizarre, it makes no sense and has no reality in it whatsoever. But she did seem to think that such existed, and were a blight.

You are fine - I did not see it as semantics. And this is why it is important to really analyse literature, particularly when the author is openly promoting a particular world view. The saddest thing about Rand (besides the hypocrisy of her later life) is that it is really difficult to have a conversation like this where we talk about the ideas and do not degrade each other.

~~~

You cannot expect people to pull themselves up by their bootstraps when they have no boots.

In one hundred percent of my lived experience and anecdotal experiences I have been able to pursue, there is always a reason for not being able to take advantage of an opportunity. No one, I assert, no one is "happy" being poor. Some are making the best of their circumstances, and good for them if they can. Usually, people making that claim have no idea of the chasm between being on state sponsored assistance and becoming self-sufficient. Often, the job openings available cannot help bridge that chasm. But now we are getting past common perceptions of poverty and getting into the reality of it, and I do know know if this is a venue where that is desired, or if it is a part of the conversation worth getting into right now.

~~~

Eh, given that most state's assistance is not enough to live on, let long live a life of leisure, I have a hard time believing that. Are their some cases of welfare fraud? Sure. But the myth of the Welfare Queen, living a life of luxury courtesy of the state is just that: a malicious, ridiculous, and downright stupid myth. But the Randians eat it up and have made it a central pole in their tent of misguided self righteousness.

~~~

Ah, I see now. Thanks for the discussion, but you have some dead give a ways in your last two posts that lead me to believe we are not going to actually get anywhere with further discussion.

Because we could get into the weeds and prove that if you have children to care for, or conditions that require constant medical coverage, or any number of situations that make the gap between getting your first couple of paychecks and when the state cuts you off simply too wide for too many people - but you illustrate above that such would not really mean much to you. {I have done the math before, for multiple states - usually the new aid for an additional child will not even cover diapers, let alone be "extra money" in any way.}

I have lived, and am currently, living these situations. I am finding this a unique phenomena, the linking of morality to financial success or lack of it. It is bizarre. Not to knock you, specifically, I mean that it is a weird cultural thing. 

~~~

{The conversation mostly devolved at that point. Reading the above, the poster took what I said and turned it into a tirade against them. It was a beautiful illustration of both missing the point, and turning logic into a personal attack. The poster also was apparently unaware that I am disabled, that that, yes indeed, they were talking about me. But this issue was bigger than that.}

Hmm, in my two paragraphs I do not see any twisting or manipulating - or even any of the extrapolation that would allow such. Hell, I did not even say that you were one of the people comfortable punishing poor people, only that perhaps you could educate me on their mindset. You do protest too much, I think.

And it is about me. It is about you. It is about everyone. It is about the poor. It is about the people that have been poor. It is about the people that will be poor. It is about everyone. And so, yeah, I am pretty damn uncomfortable with blanket moral judgments towards "the poor" as a group. Especially "slothful" - because that has to come from someone that has never been poor, because being poor is damn hard work. I do find it a convenient landmark, though, because the people that throw the word around obviously are completely disconnected from the work of just being poor. The running around, the appointments, the paperwork, the requirements just to receive any kind of aid - they do make you work for it. Hell, Disability alone takes an average of two to three years to resolve a case.

Most USian households are one paycheck, one health calamity, one car accident, from suddenly being poor. Do they deserve your moral indignation? No, they do not. But it is far too common to find your own "Welfare Queen or King" and decide that this morally bankrupt person is the face of the poor. Never mind that most aid is given to white house holds that simply had that one paycheck calamity. Or were downsized. Or became disabled. The true face of poverty in the US is us, you and me, not your "morally bankrupt" scapegoats. Much like in war, the dehumanization of the poor allows us to treat them as this other deserving of what ever they get. lucky for the scraps thrown their way.

There is a preponderance of evidence supporting the fact that we are the face of poverty. Or more appropriately, that you cannot generalize the way you would like to. If I thought I could change your mind, LMGTFY {Let Me Google That For You}, but you can easily do so if you want. You could have done so before this discussion, or during it.

Side note: I do not know about all states, but in mine if you are working on a 4 year degree you are disqualified from receiving help maintaining your household from the state. I know that for a been there, done that fact. Because your full class load keeps you from looking for full time work - so you are not eligible for aid. How is that for irony? Again, the result of policy makers having no contact with reality.

Gimpy Gamer

Hallo! I have several drafts I am working on, some of them thanks to you all chiming in on my Ask the Readers post. I want to take a moment to thank you folks that chimed in, I appreciate it and I am working on what you indicated that you wanted to read!


Today I want to talk about gaming. I am a Gimpy Gamer. I am a Mom Gamer. I am a Girl Gamer raising two more Girl Gamers, living with two additional guy gamers. I am sometimes a hardcore gamer, but usually a medium core gamer. I play Xbox games, I play social games. I have played tabletop RPGs, I have played LARPs. I live in Indiana, so you know I play euchre. I can play some other card games. I have played blended games like Zombies!!! I have enjoyed some really terrific ARGs. I have a set of Pirate Farkle which saw some great use during a power outage.


I have some great satisfactions and concerns about the state of gaming today, particularly as it involves politics. Gaming does not have to be political, but it often is and that is not necessarily a bad thing. I do not see any serious political message in, say, Bejeweled. (And I have played the hell out of some Bejeweled, to be sure.) But gaming can be highly political. Some political games off the top of my head: Star Wars: The Old Republic (franchise, two RPGs and an MMO), the whole Fable series, the Mass Effect franchise, and the Bioshock series.


You can play any of the games I have listed and not notice the politics, or not care - but it is in there, and goes to the very heart of some issues that sometimes games can best address. The first Fable questions the nature of heroes. The third Fable address the right to rule. The Old Republic's handling of the truly murky nature of morality shines best in the second game, and this is why it has earned a place on my imaginary shelf of Best Games Ever. Mass Effect forces the player to wrestle with the concept of "the greater good," how to serve it, and what personal sacrifices it may require.


Last night I was playing Star Wars: The Old Republic with my Menfolk and got a face full of politics written so well that it warranted repeated mentions by us. We, as our characters, had to decide what to do about a person illegally imprisoned and tortured for the crime of attending rallies and reading materials produced by a group disagreeing with the local government. We had to face a squad of soldiers that had been abandoned to die by the intergalactic government and the price they wanted that administration to pay for it's crime. Our quest line felt like a Law and Order script (ie: "torn from the day's headlines," and I mean that in a good way. It lead to a lot of discussion about those issues as they pertain to our current and most recent Presidential administration and how they handle these sorts of issues.


What I want to do with this post is start to establish not just my own interest in gaming, but to establish games themselves as worthy of further focus. My life does change how I few games: as a woman, and a person with disabilities, as a bisexual - all of these things and more are part of how I view games and influence my opinion. Lucky you, I will be sharing my opinions with you and asking you for your opinions. But while we dissect them for meaning and influence, I want us to not forget that the point is to have fun! Speaking of, I have a bit of housekeeping (both personal and literal) to do before I finally get to try out Deepak Chopra's Leela. Once I do I will share what I find here!


Have fun!

Dear Bill Maher

Dear Bill Maher:


Fuck you.


Wait, perhaps I should explain. On your HBO series, Real Time with Bill Maher, episode 238, after your opening monologue, you conducted an interview with Dr. Drew Pinsky.


For the most part, it was the standard off-and-on funny middling self-help celebrity interview. I had some hope that this would be good stuff when Pinsky called "bullshit" right away on some of the standard thought processes regarding celebrities and addition. Even better, when you both touched on how street drugs seem to, regarding addition in general, have different, less fatal outcomes than prescription drug addition. This is not part of current common wisdom and needs more discussion and scrutiny. I thought it was useful that you two delved into why celebrity addiction deaths seem to follow a pattern regarding "downers." It was really poignant when you two mentioned that sleep is the one thing that no one, no matter what their wealth and status, can order up on demand (particularly once one has built up a resistance to  Benzodiazepines , etc...).


But you and Dr. Pinsky talked a bit about painkillers, and you went so far off the rails you crashed the train in to the station. You quoted a statistic stating that while USians are a small percent of the world population, we use 56 percent of the painkillers and asked "What is it about Americans that we cannot cope with pain?" 


Deep breath, here we go...


So just starting out you make a gross generalization (and I do mean gross) and make me wonder what the hell is wrong with you. You give that statistic without citation, and with a number of assumptions. Have you even thought about what may be contributing to that statistic? That perhaps, with our extended lifespans that people are living longer in bodies that become more and more prone to conditions that cause pain? That there are numerous conditions out there that can not be cured, used to be fatal, but now are at least partially manageable and that one of the things that needs to be managed is often pain?


What is really important here is that you are feeding a stereotype of Americans using painkillers that itself can be deadly. Chronic pain is a vicious thing that uncoils into every aspect of your life, poisoning it. It does not just harm, it kills. Chronic pain kills enjoyment. Chronic pain kills serenity. Chronic pain kills relationships. Chronic pain kills self esteem and self reliance. Chronic pain drives people to suicide.


Do you have any idea how many people I hear from that live their lives in more pain than necessary, not out of deprivation but because of the stigma of pain killers? It is all I can do to not stop right now and sob just at the thought of the needless pain that I personally know is out there this morning. I am now, right now, needlessly suffering because my current pain killer and dose is no longer effective, but I just do not want to wrestle with my health care network. I just do not have the mental and emotional stamina to face being treated like a criminal because I have the misfortune to have a body that hurts.


Mr. Maher, please quit feeding the stereotype. There is genuine suffering out there, in here, that should not exist. If nothing else, in this modern age, we ought to be able to alleviate suffering. Our willingness to do so is part of our measure as human beings. 


I will toast you, Mr. Maher, the next time I take my nearly criminalized, carefully measured and monitored, and now rapidly approaching useless pain killer dose. If you cannot speak of those in pain or chronic pain with some humanity, compassion, and education, then please do not speak of us at all.


Edit: spelling error, 2/26/12