Friday, November 23, 2012

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.





Wednesday, November 21, 2012

Two Words

The following is a flare rant I wrote about a month ago, and then promptly forgot about because I was flaring. So here you go, and at the bottom I ask you for your flare advice.

Fucking. Flare.
Seriously. Thursday I missed my physical therapy, and that makes me feel about two inches tall. This is because it is low/no income and that means that someone else in my position or worse could have used that slot if I had been able to cancel earlier. This is a traveling teaching group, so when you miss an appointment not only could someone else have used the slot, but there are P/T students there that need to learn that are also going without what they need.
On the up side, they used the hour to learn more about lupus, fibro, and my upcoming wrist surgery and how all those things can impact physical therapy, not just for me but in general. Which is awesome! I have actually apologized to the students for being so complicated, but the lead P/T said to never do that, that patients in real life are always complicated.

I am going to talk to my physical therapist and find out more about how one can access low/no income therapy like this, because I think it is very important.
Hate. Flares. My physical ability goes out the window. I have a wicked Flowers for Algernon thing going on while I flare. It touches everything I touch, and I resent the hell out of it. Lately, though, I am trying to lean into experiences and really be there and understand, but flares just suck so god damn hard.
This seems to be a mini flare, which hopefully means it will only last about a week or so. So, umm, hurrah?

When a flare happens, I try to cut down on anything that the flare could ruin. Say, if I have an appointment or need to make an important phone call I will do what I can to put it off until the flare is gone because my cognitive ability goes right out the window. Delicate repairs or mending are definitely off my To Do lists. Sex can be a downright mess if it is the fibro that is acting up. I try to keep my focus narrow and easy to cut down on both outward mistakes and inward strife.
What do you do when you flare? What do you put off, what do you muddle through?

Tuesday, November 20, 2012

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!

Friday, November 16, 2012

ProPatient: Carpal Tunnel Surgery

Monday I had open carpal tunnel surgery. I had a hard time finding personal resources on what to do, what to expect, and how to plan before and after. So here is my experience, along with whatever advice I have for other folks going through the same thing. Be warned, I am an asshole, so for folks finding this in a search, this material will reflect me.

Read more after the jump. This is a long one!

Thursday, November 15, 2012

Evil Hand Issues!

Monday was the day. I went in for open carpal tunnel surgery. I was in a panic. Not about the surgery, that was pretty routine. The panic comes from the idea of not being able to use my dominant hand for weeks.

I read. I keep house, as I can. I write. I game. I sew. I bead/make jewelry. I fuck. Everything I do needs that hand.

I have never had a cast, so this is another reason this is going to be a nightmare. I am sure I will bang it into everything, and I hate the idea of not being able to use my dominant hand. Turns out, it is a small, soft wrap and not that bad at all. It does sometimes itch like fire inside, though. Arg!

I am now back at my desk and am piecing together an article about the whole surgery et al, since I only found a few good resources. I am recovering well, and hope to avoid the ever present threat of flare while I heal.


And I need to be spiffy for a friend's wedding this weekend!

Tuesday, November 6, 2012

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!


Monday, November 5, 2012

Planned Parenthood of Indiana

Planned Parenthood of Indiana does awesome things. When I was much younger, I had a cancer scare, and I had no other way to find out what was going on except through the low cost services of PPI. Fortunately, I had nothing to worry about in the end.

I have already been teaching my daughters about Planned Parenthood, safer sex, and both societal attitudes about sex and (versus) real life sex. I am glad I started early, as soon as they started asking, because even then it is a raging battle to make sure that they value themselves both as human beings in general and as free sexual agents. (No, I do not say it like that, but you get it, and they are starting to get it.)

Recently, PP has been working on political awareness, because a lot of politicians seem to want a government small enough to fit into every vagina in the land. The #YesWePlan effort is great, and here is my pic:




Here are some places you can find Planned Parenthood:
Facebook
Twitter
Web
Planned Parenthood Action Center

Because there is some awful up there in the links, I offer a relevant palate cleanser:




And I say:

GO VOTE NOVEMBER 6TH!


Friday, November 2, 2012

Gimpy Gamer: The First Three

So I nearly jumped for joy when I read this: Halo 4 Creators Introduce Lifetime Ban for Sexism. Wow, that is a hell of a step in the right direction! As a lady gamer raising girl gamers, this is such welcome news that I cannot even tell you. Here is the Gamespot article.

One of the problems with bans like this is that in order to make it work, often other paying gamers have to remove themselves from the game in order to file a report/complaint about a gamer ruining everyone's good time with sexism, racism, homophobia, or their social ill of choice. 

It is an unfair expectation of someone paying to use a service to have to take some of that paid time to essentially work for the service instead. But this is the world we live in now. Since it is silly to expect any service like Playstation or XBox Live to be able to monitor every gamer in every game at every moment of every day, we have to do our part.

I want to see a movement where those of us paying to use a service like XBox Live vow to do our part. I want us to promise that we will take the first fifteen minutes of online game time to report it when trolls are being trolls. Or, say, your first three Matchmaking games of a night - promise that you will do your part and allow your games to be interrupted while you report someone making sexist rape "jokes" in your Matchmaking. Or promise to report the first three trolls of your night.

Once your three games, three trolls, or first fifteen minutes are done, then you can sit back and enjoy your flow, unless someone is so bad, so inhuman to their fellow players that you simply have to report them no matter how good your gaming flow has been up to that point.

Gaming flow is important to gamers: once you settle in, set the real world behind you and get your head in the space of your game of choice, you want to stay there if you can. That is reasonable. I argue that if you have some homophobic bigot ranting and raving through your Big Team Battle, then your flow has already been interrupted, and taking a moment to report the troll can help keep that particular troll from messing with not only your flow, but the flow of everyone else that plays too!

So please stand with me in taking The First Three pledge. Let us make multiplayer a better place for everyone, and show that we actually care about the community we play and live in! I know that after the election is over, I will be as immersed as I can be in Halo 4, both campaign and then maybe even matchmaking with strangers (usually I only play with folks I know). I will take the First Three pledge!


Thursday, November 1, 2012

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. 

Wednesday, October 31, 2012

ProPatient Rides Again!

I am in ProPatient mode again! So we will have a lot to talk about. I find myself, more than anything else, going to see labcoats when I go out. I have the patient versus consumer philosophical discussion fairly often both out loud and in my head. I am sharing personal information with strangers a lot, and you know how much I enjoy that sort of thing.

I have a lot in my head about medical information: how it is shared, used, what direct input I have as a patient, all that sort of thing. I think that this is a terribly important thing tha we almost never discuss, and I want to be a part of fixing that problem.

I am going to have open carpal tunnel surgery here soon. I am in PT for my back, which is a necessary step to get the insurance to do something for my bulging disks, but we are getting a lot of other work done. One rheumatologist has confirmed lupus, another calls fibromyalgia, my GP and I think that, sadly, they are both correct. I am cutting down on caffeine and cigarettes. Or trying to, anyway. 

Since the carpal tunnel surgery is coming up first, it is what I am preparing for the most. I am beyond aprehensive about losing the use of my dominant hand for a while. And hey, if you know of any low cost or free speech to text software, I would greatly appreciate knowing about it! Please share it below.

This has triggerd a long delayed house reorganization. The basement is undergoing the worst of it, because it had become a place to simply store things, and the ablity to work there was lost in piles of stuff. The same was true for my desk: it was buried in all kinds of paperwork not deemed an emergency at the time.

Of course, politics have been formost in my mind as I go through all of this, and the discussions of entitlements and the Affordable Care Act have emphasized the truth: politics are real life! And we need to talk about them. Here, politics are life and death and quality of life.

Tuesday, October 30, 2012

Welcome Back

Hallo, welcome back! Things have been busy lately, and I have neglected my charge here. For that, I apologize. Good news for the blog: I am back in semi-professional patient mode, and that has given me quite a lot of material.

I never stopped writing, but I caught a vicious case of the Little Hater:


I am sure you know what I mean. So I have virtual reams of stuff written, almost none of it fit for public consumption, I thought. Turns out, a lot of it is all right, and if it is still relevant in any way I am going to share it with you.

The political landscape is malicious and confusing. I am more likely to talk about issues than politicians, except in the case of the special folks we have running out here in Indiana: Mike Pence and Richard Moudock.

Strap in! Around these parts, it is about to get interesting.

Friday, June 8, 2012

Where Have I Been?

Hallo. It has been a while, but you and this blog have never been far from my mind. Unfortunately, all of my current drafts of pieces to share with you look like trash right now. I have been quite distracted. The kids have needed help. Minion One and I are both dealing with new diagnosis (and the same med for each of us!). Minion Two's birthday was last week! I have been sick (surprise!). It has been busy and disorganized here. Sigh.


This month the Husband and I will celebrate our sixteenth wedding anniversary. Woot! And we have been together twenty. Suck it, everyone that thought (and especially those that said) we would not last!


This year our poly family has been in our current configuration for ten years. More woot!


I almost have the silver hair I have wanted since junior high! After salons told me they could not do it, it could not happen. After a beautician that was a family friend said she could do it but never did. After all that, my bald Boyfriend amalgamated a bunch of instructions and anecdotes. We got the tools and the chemicals, the bleach (although they call it "lightener" now) and the wash. The process was long and hard to sit through. The Boyfriend was nervous. I was anxious. The wash took everywhere but where I needed the "lightener" the most. So one more sitting and I will have all silver hair. Down to my ass silver hair will be mine! Oh, yes, it will be mine...


So it looks like I have IBS (irritable bowel syndrome). I am on a med I have to take before I eat, and other than some diet advice, I am kind of floundering. Thanks to a walking, talking personification of awesome on G+, I feel more capable of dealing with this. So thanks a bunch!


This lupus/fibro thing has been kicking my ass lately. I wasted through part of the winter and then put that weight plus ten pounds back on super quickly.


We are battening down the hatches for the end of the school year. I have put together a earned/pledged privilege system. And I am making plans to do more things with the Minions, rather than let the summer slip by without doing something sometimes. Movies, video games together, working in the yard, napping - I want together time before they are too busy for their 'rents, you know?


Toe shoes - they rock. I lucked into some, and I will be talking about them.


I will be talking about the games that I have played recently, all the political stuff going on and how it may change lives like mine and my family. There is so much going on and I want to share it with you.



Friday, May 18, 2012

GimpyGamer: Favorite Nerd Resources

I have some ideas for little articles when I am sick or busy, and this one is sharing resources I use and why I like them. Hopefully these will either be useful or at least only minimally annoying! This post is not all inclusive, feel free to bring your own perfect nerd resources and leave them in the links for all of us to share in the awesome!


Right now I have a couple of posts brewing, one all ready to go except that I do not have a good name for the thing the post is helping us make!


This post's theme is nerddom. I am a gigantic nerd about a handful of things: movies, Halo, Mass Effect, Portal, Halo, Minecraft, Bioshock, the Whedon 'Verse, and of course, Halo - to name just a few. As I write this, I am losing hours, because I needed to get caught up on several of these sites!


Movie Bob 
Movie Bob is a big nerd of both geek culture and movies, so his reviews tend to parallel our thoughts after seeing a film, so he is the perfect movie reviewer for us! (Movie Bob is my guilty secret, because I have to go to Escapist to see his stuff - see Extra Creditz for more...)


We Nerd Hard
WNH is part of the This Week in Blackness BCCo Studios media empire, and is scheduled to make a come back next week (5/23/12). They cover tech trends, new gadgets, anime, current nerd media (Game of Thrones, anyone?), and gaming. If you have not, you should check them out!


Geek Feminism
GF kicks it old school, but with the understanding that social justice can influence our whole lives, especially our nerd endeavors. You will find topics like programming and sexism, gamer geek culture and LGBTQIA equality, and general geek commentary from a humanist, social justice perspective. Geek Feminism is useful, funny and poignant.


The Digitized Ramblings of an 8bit Animal
If you like to blow on your games before you play them, then this Southern gentleman is for you! Seriously, though, he covers a lot of modern releases with a sensibility I appreciate quite a bit. The only difficulty with 8bit's site is that most of the entries are videos without transcripts.


Border House
I love this blog. This is one of the few places where a geek can go to get informed on gaming culture while knowing that each piece will have a understanding of inter-sectional life in the real world. This was the one stop place for news on FemShep, and I love them even more for it!


Go Make Me a Sandwich
GMMaS recently moved to Word Press, so the above link is the new one. Posts are not regular anymore, but the writing is a resource too good not to mention. Now the action is at Gaming As Woman. If you want to know how some marketing and writing can come across to women that game, you need go no further than this site. I highly recommend it. Look for the series about female avatars/characters and armor/dress.


Nerdgasm Noir Network
Here is special treat for you, because NNN has multiple shows: Nerdgasm Noir, Character Select, and Operation Cubicle. You can watch the NNN live if your schedule allows, and it is a great time! There are eight or nine folks bringing the awesome here, and they are well worth the time.


Extra Creditz
Extra Creditz is a video series by a trio of game culture, study and production devotees. Their motto is "Because Games Matter." Come here to explore and learn. They cover everything from game pacing and how, at it's best it mirrors other art forms that garner far more wide spread critical acclaim.


Nerdist
Nerdist used to be just Chris Hardwick, but now he has a crew of awesome! I really wish that crew was more diverse, but I think that giving Felicia Day and Harwick a chance to make that happen will pay off for us. Hardwick is a comedian, geek, and pop culture maven.


Wil Wheaton
Wheaton is a great example of someone that has been around since e-mail addresses had things like in them and took as long as snail mail. He is doing great things out here, and I think you should take a look. He is a great resource for nerd culture in general and specifically things like pop culture, gaming, and brewing.


Halo Waypoint
This is where I go to get my official Halo news. There are tons of well done fan sites, but if I start down that rabbit hole this will become a "Great Halo Sites" article, and while that would be awesome, it is not what I am trying to do right now.


ThinkGeek
This is where we go for almost all of our geek shopping needs. From some laptop peripherals to an Aperture Laboratories shower curtain, the house is full of stuff from ThinkGeek. Also, they have a bonus point program and they make it easy to spend those points. On the few occasions (over years, mind you, and purchases any time we were flush) we had a problem with a product, they were very responsive and nice while fixing it!


Jinx
If ThinkGeek does not have what I am looking for, then Jinx is my very next stop. Special mention should go to their huge amount of Minecraft gear and toys. They also have a "leveling up" system, but I have no experience with it.


Minecraft Home Design
This series, along with the Medieval Minecraft building series, are so helpful in learning how to build what you want to build rather than just what you think you can throw together before you get 'asploaded! So if this is your thing, be sure to check out Durandal of Aegis.



Monday, May 14, 2012

In SmartAss News: Homophobia Is Bigotry

So it is time to address some of the fallout and questions I have seen about the President's recent evolution. Let us start with a working definition of homophobia:

"In a 1998 address, author, activist, and civil rights leader Coretta Scott King stated that "Homophobia is like racism and anti-Semitism and other forms of bigotry in that it seeks to dehumanize a large group of people, to deny their humanity, their dignity and personhood."

The President's announcement is pretty historic (although certainly not a complete pass to equality) because when a sitting President comes out for the civil rights of a group, the country always, always follows. This is what has a lot of bigots tied up in knots. The arc of the universe bends towards justice, not their own preference, and they know it.

The trouble with homophobia is that it is still so accepted and standard in many circles that it can get hard to pin down. I am very comfortable with the above definition. 


If someone is devaluing the citizenship or humanity of someone because of orientation, or race, or ethnicity - I have no trouble calling that bigotry. I refuse to succumb to the idea that it is worse to be called on bigotry than it is to be a bigot. Now, bigotry can be motivated by ignorance or intolerance, and people's willingness to deal with or help that person may change based on that source. 


I do not remember where I learned this, but I have found it to be of infinite value. If you wonder whether or not a statement is bigoted, replace the discriminated group with any other minority group. This only works for a semantic comparison, not an experiential one, mind you.

"Lesbians should not be allowed to marry."

"Black people should not be allowed to marry."

"Jews should not be allowed to marry."

"Mentally disabled people should not be allowed to marry."

Which one made you ask if it was really bigotry? None? Good, because they all are bigotry. Some are just still somewhat socially acceptable. Now, each group's historical experience with this struggle is different, and unique maybe even inside of that group, let alone in comparison to other groups.


Is it bigotry to say "Well, civilly I am for Marriage Equality, but on a personal/religious/cultural level I am against it?" Yes, yes, yes - that is a bigoted thing to say. Fortunately that statement at least acknowledges that their bigotry should not be law.


By avoiding those gut-reaction words like bigotry, we let people get away with things they should not. I would rather call a bigot a bigot then let one be legitimized by my lack of response or an inadequate response. (Not to offer a false choice there, but to state my perspective in total.) It should not be used lightly or in jest, and only when called for: gays should not be able to marry, women should be in the kitchen, disabled people should stay at home, affirmative action is reverse racism - that kind of stuff. You know: bigotry.

And seriously? If someone is a bigot, then my last worry is worry about offending them. My life has rough spots, but one of the benefits of being out of most loops is I rarely actually have to take crap from another human being. I can chose to do so, but rarely is it mandatory. So in most cases, I can flat out call bigotry, bigotry.

As a last note, let me say this: I am really tired of people acting like this struggle for civil rights should not be compared to their struggle for civil rights, as if one would sully the other. I have two words for you, but I am going to hold onto them. "Oh, but those people and what they want are different!" Some will not stand a comparison between suffrage/feminism and the Freedom Marches, Rides, and summers. Others will have no comparison between the black civil rights movement and marriage equality. No civil rights movement is the same as another in character, influences, changes made. No civil rights movement can stand isolated from what went before and what came after or what else was happening then. 


So why the protestation at all? I want you to think long and hard about why letting mine touch yours would be bad. Maybe you are not as enlightened or progressive as you think... But you could be.


Hey, if you are ready to really get down into it and work on it, I am right there with you. We should all be trying to be better every day. I know I am trying. Sometimes a bigoted thing with come to tongue, but I try to grab it and figure it out it's where and why before it hits someone else. If it does spill out, I own it and apologize for it (and be mortified by it) and make it a lesson to keep trying to do better. See how that works? I could never count, nor thank enough, the people that have helped me along the way. I will lend a hand when I can to attempt to meet that beautiful responsibility.

The lesson of the day: let us call a bigot a bigot, and have no shame in the naming of it.





Friday, May 11, 2012

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.

Thursday, May 10, 2012

Thank You, Mr. President

I guess you know what word is spreading like wild fire that you affirmed the personal belief that you hold regarding marriage equality. You sat down and told the world that you believe gays and lesbians should be able to marry. That is terrific! Great news! The first time in history that a sitting US President has done such a thing.

I think this is what fact based patriotism feels like. I have twinges of it during your administration: the end of Don't Ask, Don't Tell; ending defense of the Defense of Marriage Act, hell - your election!

There are some mixed feeling out there, and I feel some of them myself: from supporting oppressive structures in your statement to OFA not lending itself to the North Carolina fight that was lost this week. These are valid, and with the Jedi 3D chess that is your campaign mechanism you had to be aware that such was the case.

I get that but here is the thing: when you, the President, comes out in favor of something like this, the country inevitably follows. And with that follows complete civil rights. I think that you, Mr. President are keenly aware of that, and just applied for the drum major position in this parade. Now, the drum major does not write the music, the drum major does not even play the music. But the marching band cannot do a damn thing without that drum major. Now we need you to do the thing you just signed up to do.

I am in a difficult position right now. I happily acknowledge all the good you have done. And yet I lament the opportunities that passed by ignored. I see you as a shining leader, and yet I have to acknowledge that you are, in fact, a politician. You are a damn good politician. And with that comes the ability to sometimes ignore moral callings that may hurt your career - all done in the name of being able to do more good down the road, of course. I see you as a pragmatic politician, not a craven one.

Given everything, I still have to say: Thank you, Mr. President.

Most sincerely,


PatientC

Tuesday, May 8, 2012

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



Monday, April 30, 2012

No, Not All Sides Are Equal: Sexism

So the false equivalency thing is making the rounds again. That both "sides," liberal and conservative, are the same. I just have a thing about the false   equivalency. Here I am going to treat you to some material I have written about sexism on the liberal "side."


Bill Maher gets letters every time he pulls that misogynistic bullshit even though he has a long career of transgressive political stand up where, yes, the standards are a little, a little more relaxed - but not when it comes to misogyny. And, of course, his persona is an asshole (no idea of that comes from his personal life, or is on stage only). Some highlights from my own letters include things like "...if you have to point out that someone has (or is?) a vagina as an insult then you should have retired years ago, because not only are you a cad, but you aren't funny anymore, either." Or there is this: "You are blurring the line between you and them sir, stop it." And there is plenty of material about how Maher screws up on sites like Shakesville. Just because the push back does not get a lot of flashy press does not mean that it does not happen.


Ed Schultz took himself off the air for an unpaid week - he took it to MSNBC less than 24 hours after it happened, and said this is what I want to do: I am going to take an unpaid week off the air after I apologize live on my show and tell my audience what I am going to do. He was not suspended, but if they wanted to punish him further, he was open to it. That is about as much class as a human can have and still managed to screwed up in that way, I think. It did not erase what he did, but it did set a good standard for how to behave after. And effective damage control, too - that was so quick there were only rumbles of a letter writing campaign to him or MSNBC or his radio bosses before he was acting on it himself.


The left, or at least the patch of left I camp out on - is indeed consistent. Even if I otherwise like or respect a performer, politician, or other mucky muck I will loudly and enthusiastically let them know when they screw up. When it comes down to it, I and a lot of other liberal or progressive folks are harder on liberal figures because, goddammit, we expect better from them than the likes of Limbaugh. And the feminist and womanist blogs I read? They HATED defending Michelle Bachmann, Sarah Palin, Ann Coulter, Ann Romney and their ilk - but every time someone went after their gender or gender performance with some sexist garbage, they stood up and yelled about it! Just like they did for Sandra Fluke.


Both sides are not equal. And when my "side" screws up, a lot of us push back. It feels a lot like being consistent is also being invisible. I do not know what that push back seems to not get the same coverage. Maybe it is a non-story because it is expected, or it is quick, or the stories are small in scope, or it is boring.

Wednesday, April 18, 2012

Words and Political Correctness



I had the opportunity the other day to participate in a terrific community discussion about political correctness, specifically referencing things like A-line ribbed tank tops, the use of the word "rape" in a gaming environment and others. And I want to explore the idea of political correctness here. No links or anything, just trying to iron out some ideas and see what they are.


I want to set some hyperbole aside. When we talk about social political correctness, we are not talking about laws at any level. There are no Jack Booted Language Police. We are simply dealing with social norms. And those can very from nation to nation, culture to culture, house hold to house hold. And just like every other social norm, we are all constantly juggling one to another as we go through our days and our lives.


No law, no physical impediment keeps you from using a politically incorrect word or phrase or idea in conversation or media. The gripe is that if you do value your right to a word over the potential offense or harm it may cause, your may be viewed as someone that does exactly thatThe problem is not the use of this word or that word. They can still be used. The only penalty is that your peers may, may see you as someone that values their right to a word over their hurt, offense, or harm. 


The social price of political incorrectness is being thought of as an asshole. 


I want you, Gentle Reader, to know that I did not start over here, although I wish I had. I started over there, demanding my rights to words and other people's right's to words. I am a greater fan of the 1st Amendment than the 2nd Amendment - and I value them both quite highly.


I had not considered every one else's right to exist at least with my indifference, if not any benevolence. But those other people, they should not have to guard themselves every time they are among other people. They should not walk in fear that I may throw them back to an abusive marriage or a sexual assault just because they had to go to the store. They should expect the world to be as indifferent, neutral, or benevolent to them as you expect it to be for you.


What happens when you are brought to someone else's pain is that you are being trusted with it. If I say to you that a particular phrase or word is upsetting to me, you have two decisions to make:
  • You either believe, or not. I have a responsibility to be honest, and I will probably even try to be patient if my situation is not one that you could have been expected to be tuned into. But then you either believe me, and take me at my word that something is offensive to me personally or maybe I say that as one of their number, some of these folks are offended by that. You can educate yourself as much as you like later, that would actually be great. But in this moment, it is simple trust issue.
  • You either care, or not. While that may sound cruel to the person being asked to stop offending, upsetting, or harming - I guarantee that it is less cruel then being asked to forgive or ignore someone while they knowingly do harm to you whenever, however they see fit, forever. Because whatever burden you carry is simply unimportant to them. 
That is it. 
  • If you believe and care, you work to change a language habit (you do not really "lose" a word in any actual sense), and you show a wounded someone that there is at least one person out there not willing to knowingly hurt them further. 
  • If you care but don't believe, you start asking or teasing about exactly that harmful thing, maybe discounting the very idea, or act like the stated harm is over-reacting. Hey, maybe you ask friends and strangers around you if this thing "is really offensive?" Because: 1st Amendment. You may change your language use if you do research that confirms, or other people concur.
  • If you do not believe and do not care, then you will change nothing about your habits, maybe dig into the wound a little bit, you know, to prove it is not there. Because: "plenty of people go through more and aren't crying." 
  • If you believe and do not care, then hopefully you are apathetic, but maybe you dig into that wound often and deep, you know, to help them "get over" their sensitivity. Maybe you envision yourself as some sort of Devil's Advocate. As if the person trying to trust you has not had enough of true adversaries.
There are other options, and many other factors that may influence a particular situation, but I am comfortable with those four as likely types of outcomes.


I have said before, and I truly believe it: "Political correctness is a quick and easy guide to avoid being seen as an asshole if you are not, in fact, an asshole."

I truly do not understand how being conscientious of another person's history, or that of a group of people, is walking on eggshells, or some other surrender of personal power. Why is it a problem to have to think about these people with a problem? Surely they have to consider you. Why is it not a instead a strength to be in a more grounded, solid group free or nearly free of such angst, pain, distrust, suspicion and harm?



Wednesday, April 11, 2012

Opiate Crackdown... Again.

So the New York Times has written about the newest opiate prescription crackdown. This will come as no surprise, but a deep burden, to pain patients everywhere. Like life with the kind of pain that gets opiate attention is not already hard enough.


I know that my life is not indicative of all lives, and that my experience is not universal. But it is already hard enough, dammit. I already have to schedule, attend, and pay for doc visits I do not need (as opposed to the many I do need) in order to "check in" on my pain script. I have already mentioned several times that it is no longer cutting it, and we are going to have to find something better that still leaves some upward mobility in this area for the rest of my life.


That is part of what I mean when I say it is already more difficult than it should be. I have to plan to be in pain for the rest of my life. Imagine that, if it is not your life:  you can never, ever have a pain free day. Not once can you ever go to sleep thinking that tomorrow will be better. That maybe, one day, you will find a way to not actively suffer throughout your day.


Just think about that for a minute.


So, your pain is incurable, but "manageable" through drugs. Opiates. And at every turn, it feels like someone is trying to remove the one thing that makes your daily activities possible. That allows you to not spend your day curled up in a ball, in tears, on the bed you rarely leave now.


Also: no one believes you. No one truly has a hint of a clue as to what life is like in your chronic pain body. And they simply cannot fathom the amount of pain one human being can feel and still be here, still be trying to function, still be trying to make some thing of their life. And they cannot imagine that one may need an evil, addictive opiate to manage. They do not understand the difference between addiction and dependence. Hell, a lot of detox programs do not understand that difference.


So sure, they may catch some people abusing the system. And some doctors may, from what was in the article, find some other, maybe even more effective treatments for a few. But what this really means is that a lot of law abiding patients are going to be in a lot more pain in the name of... Hell, I am not even sure. It will not matter to those patients. It does not matter to me. I just want someone to have an idea of the hell that some people are going go through in the name of it.











Monday, April 9, 2012

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!



Friday, April 6, 2012

How To Be Black

Yeah, I know: what the hell is a white crippled lady in the Midwest writing about how to be black? Well, I was encouraged (you know who you are!) to apply for the street team for the upcoming release of How to Be Black, or #HtBB, and I wanted to be a part of it. It looked pretty special. So I applied and let them decide. 


And it is.


Note: I have always said that I would tell you if I got a product or service for free either through other methods or specifically for review here. I did get an e-copy and later a physical book for being on the street team. Just so you know: I am likely to be more strict on a product I receive this way. And I still loved this book. So take that as you will.


How To Be Black is the brain child of Baratunde Thurston, you can find his other information here. One of the first stories he will tell you in HtBB is how he got his name, what it means in general and what it means to him. Baratunde is a master story teller whether it is as an editor at The Onion, getting political at Jack and Jill, or his various media appearances (including multiple appearances on Blacking It Up - shout out!). I only needed to listen to his voice and his manner of storytelling to know I would sit there as long as he kept talking.


The title is joking in one way - reading it cannot make you black; but it seems to me that in another it is very serious - it does delve into how Baratunde has approached his blackness through the years, how he was taught what it meant by family members and through educational institutions. My crippled white lady ass was just as pale when I finished as when I started; but I felt my empathy stretch and grow with ease during humorous tales, and with heartache through the more touching ones.


I have told you that this fibro/lupus cocktail with trimmings leaves me bereft of higher cognitive function at times. Lately I have bounced from flare to flare to finally settling into the one currently fucking with me. But right now I have a rare mid-flare cognitive window that I am going to take advantage of to write this and hopefully several other pieces to tide us through at least some of the duration. 


I am (now, post the suck onset of my illnesses) usually only able to read sort pieces without some sort of mimetic hook - another part of the mind to hang the process on in my head. Practically this means my best reading is done when I have some other memory of the subject or author. I could read a Halo or Mass Effect novel, but not a Gears of War book. I can read Rachel Maddow or Melissa Harris-Perry, but not Piers Morgan (Dom Lemon, maybe). I spent some time on the web, specifically YouTube, to become familiar enough to be able to retain this work.


Even though I live far away from NYC, I was familiar with Baratunde Thurston. I first found him doing YouTube video hopping looking for humor about race in America (if you care about race in America, sometimes you need humor to keep you from the abyss of despair). My enjoyment and respect deepened when he was on my favorite podcast, Blacking It Up. He is suave and erudite, but able to make connections with people that are neither - a skill most do not bother to learn, not even most entertainers.


So I had high expectations for HtBB, and not a single one of them was disappointed. I was, of course, entertained. I was, at times, surprised at the personal depths he was able and willing to plumb with and for us. His stories were engaging enough to be a gripping tale. But he did not settle for just tales from his own life, he also gives us his Black Panel, which he consults throughout the tome. The panel includes the following:

The book does not need a panel for filler, which is good because he uses the panel for content, and it is a rare treat to see several different opinions about some of the tender topics raised in the book. 

I have been looking for that perfect pull quote, but no single one would really do justice to the whole thing. The book is poignant, real, funny and also just a damn good read. The overall tone is conversational and accessible. 

Reading How to Be Black did not make me black, but I think I am a better person for it. I reached out to understand someone else's story, and he trusted all of us with it. I recommend buying maybe even two copies of this book, because you will probably have a friend you will rec it to before you are done.

Wait! I found a good quote!

"If you don't buy this book, you're a racist." - Baratunde Thurston

I wonder if my neighbors will judge me if I get the #HtBB hoodie...


Edit: 11:40am 4/6/12 Grammar


Wednesday, April 4, 2012

PatientC TWIBIU Project

So I finished my fan video for the TWIBIU Project. Since it talks about a lot of things that are important to me, I thought I would post it, and a transcript of it, here. I hope you enjoy it!






This transcript is the text that I worked from while making the video. I have made the changes I remember making on the video, but every moment may not be a word for word dictation, if that makes sense. I am at the approximate end of my cognitive rope, as it were, until I get some good solid rest and meds - and that will not be for at least a little while. So I want to get this up now, and if there are other changes that need to be made, I will be happy to make them later.


So script, or transcript below! (Or under the break, depending on your viewing pleasure.)

Monday, April 2, 2012

Incoming!

So, I decided, Gentle Reader, that I have kept you in the dark too long. And the truth of the matter is sad, indeed: I keep hitting fibro/lupus fogs that have been eating away at my ability to think things through. Instead of waiting for my brain to come back, which I have been doing off and on for months, I am going to say "fuck it" and forge ahead.


But this diminishment has kept me from writing my review of the terrific How To Be Black. It has delayed my playing and review of Leela. Never mind what it has done to my personal life. Arg! I have drafts going about gun culture, about Civil Rights (TM) & civil rights. And I did actually tally up your answers to my question earlier, about what you are interesting in reading - and have started working on some of those subjects! Most of these are actual drafts that I just need to be satisfied with and publish - not pipe dream promises.


Thank you for your understanding and for sticking with me. I am sorry that the mess I am dealing with has the ability to mess up pretty much everything I am involved with or am trying to do.