Wednesday, April 19, 2017

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.

Monday, April 10, 2017

No More Excuses

In the midst of all the heartache, here I am believing I have no more excuses to ignore my few, precious Dear Readers. So here I am in the midst of a post-truth, post-Trump mindset. Here are the things I am working to accomplish:


Nissi at rest. She is maybe 6 months old here, black with tuxedo like white markings. Here she is napping on the corner of a grey couch. 



  • Training the puppy is going well. She is so much smarter than I thought, so it is much more like having a toddler in the house than usual.
  • My head hurts. 
  • My teeth need attention. Professional attention. I am working on it, appointment after appointment - now I have to see a hygienist four times a year to try to save what I have left. I am starting to sometimes actually look forward to being rid of them some day. 
  • I need to write more. A lot more. These brain droppings are cluttering up the works and so I exorcise them with you.
  • My gaming will never be better than the upper echelon of mediocre, and it is only very rarely even that good.
  • Learning Spanish is slowed to a stop, but I have not given up. Thanks, Duolingo.
  • I have the fortune to discuss the nature of reality with the author of Quantum Sorcery - have you read that yet? I learn, aid, and keep the candles stocked - apprenticeship!
  • I can now draw a sad coffee cup that other people can recognize and say "nice" without appearing to bullshit me. That is kind of cool, will keep working on it.
  • My cleaning projects had unexpected progress, which is great. Our black carpets frequently get vacuumed before they turn grey from pet fur.
  • Woot! My craft room is accessible and useful again. It does need some work. It will always need some work. D valiantly offered to get a new sewing machine if I got the room right again - I will be talking about that soon.
  • I gathered all the stuff to start learning recorder, but there are too many people home all day for me to feel comfortable going back to fourth grade right now. I can read music and I played clarinet for a decade, this so not be super difficult. But thanks to my teeth (see above) I cannot play clarinet without killing my head, so recorder it is. Well, it will be once I have some private time on the regular again.

My Buddhism may be causing this existential crisis. I have not the resources to take any great practical leap: week or month long retreat. Hell, I can barely afford a new read. But I feel like I am on the burning edge of something... I am not sure if there is much difference between a leap and a fall - besides the landing.

Sometimes I feel something... precious. Dust mites in the sun glinting like diamonds, special in their transience, their worthlessness. Connection to the suffering of others, an empathy uncontrolled in reach and depth, dangerous without the rest. 

A frustration with the things I own owning me, but raised too poor to give away all that I should, let alone minimizing as I sometimes want. Once a poor person has a thing, unless we must leave it behind it is very difficult to give things up. 

An unnamable desperation to stop feeling so fucking desperate. A coming together that keeps falling apart. 

I hope you are getting by, Dear Reader. Find comfort where you can. We are regulated to the fringe again: Outlaws that have done nothing truly wrong. 

Thursday, April 6, 2017

Blog Busy-ness

As I get used to changes here and on other services since I last knew them well enough, there will be lots of blog business & changes. I want to keep you up to date on them, but will save up for posts like this maybe once a week or so when making changes.

Most importantly: this is still a safe space, and a commercial free space. 

You can reach this blog through the blogspot address or by my own url.

In the "For Your Convenience" gadget I have added "Where is PatientC" which may grow a little. 

I have removed the "Team Blackness" page, but folks that need that information can get it by contacting me if desired.

A "Profit" page was added regarding commercial contact.

The Uptweet button appears to be broken so I removed it.

The old Facebook button was broken & so removed.

I reviewed the themes, etc and decided to keep things as they are for now. I like the simple, elegant look - let my ideas stand for themselves.

Yes, I will probably keep up the snapshots with posts thing. I like it, it helps when linking to graphic oriented pages, and keeps you and me both grounded.

The Facebook page is a neglected mess, I know. That will get fixed but I felt flustered by it after everything else and it will have to wait.

If you find issues, and have a free moment, I would appreciate you passing the word along. Thanks!

Wednesday, April 5, 2017

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 happy, large tuxedo "pit bull" puppy with a content PatientC.
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!


Friday, March 27, 2015

ObamaPhone or Indiana Lifeline Assistance

So I received my "ObamaPhone" application in the mail recently. I know there is so much to talk about right now, but since I have this in front of me and there is a ton of false information and ignorance about this particular subject I think this is necessary. Also: I want to contribute to the works that actually help people on occasion - this blog is not just for me sounding off about things that are wrong.

No big info, just for reference.
Picture of the flyer that came with my application. I wanted to show you the application, but I could not come up with a way to show you, Gentle Reader, what I wanted to show you without displaying personal information. 
They are cracking down on fraud and abuse on both corporate and individual levels. Do not falsify anything on your application.

Let me say right now that there is nothing wrong with needing a lifeline phone. They will only ask you about how you qualify, not about how or why you believe you need their phone. Even if your situation is okay but perhaps subject to cataclysmic change it is something you should consider. Maybe your need is obvious and undeniable. Maybe everything is fine today, but the finances are out of your hands. Maybe it will only take one big couple fight to find you in desperate need of a phone. Maybe you are at home taking care of a parent that uses access to cars, phones and whatnot to control you and your business. Only people that could really need one are even eligible, so do not let internalized classism keep you from help you need no matter why you need it. 

My application came to me though my health coverage. I am disabled so I have the state's health program. You can see if you are eligible for Indiana's Lifeline Assistance program here at Safelink. As with all things "free" it comes with ad offers and such, but you can opt out of most of them. But I am getting ahead of myself. 

You can apply straight up at the website above if you do not receive a pre-approved application in the mail. (Note: that approval only lasts a few days, so use your application right away if you receive one.) You can also apply at your local library. If you are having extreme trouble, you can apply over the phone, but they do save that for folks having trouble with the process.

The application I received is in English on one side, Spanish on the other, and I think they have other language options at the web site. All I had to fill out was my name, address, last four Social Security number digits, and a contact phone number if you have one. There is also a box to check if your address is temporary. 

Next you pick your plan. The choices are 68 minutes a month, 125 minutes a month, and 250 minutes a month. Each plan comes with different options. The most important one is that the 68 and 125 plans have roll over/carry over minutes, whereas the 250 plan does not. The first couple of months have bonus minutes, and my offer included free calls to my docs even if my time is used up. Speaking of, you can of course buy SafeLink cards to extend your time if you have used it up for the month.

Once you get though that, you have to swear under penalty of perjury that you belong to the plan they believe qualifies you and a handful of other statements like that a qualifying household can only participate in the plan once. If you have trouble reading small print I definitely recommend using the website so you can use your browser options to size the text to your comfort level and ability.

That is it. You can fill out the paper application, go online, call their question line, fax it. As my own application progresses I will update this article. I am happy to say that the process seems to be fairly easy so far

Updates will go here. Corrections to the above, if needed, will be added where appropriate and clearly indicated.

  • This process immediately showed itself to be a government program, in that it is difficult to navigate in ways that only the government can produce (and I mean in general, no offense to the current administration).
  • I filled out the paper application so I could walk through it in this article, but my plan was to go online to file. However, the first thing Safelink wants is your "enrollment ID." Guess what? There is no such thing labeled on the application. There is a member ID, and promo code, and a bar code, but no such number labeled.
  • My call to the help number at the bottom of the paperwork was promptly answered, filling me with false hope. The support personnel on the other end of the line was difficult to hear, and stuck to a script which did not answer my question at all. At one point there was an indication that it might be my insurance number (my qualifying program), but that is also used as my "member ID" and was not usable as my "enrollment ID." So that was a 14 minute exercise in futility.
  • I could not start a fresh application because their web form would not accept my hyphenated last name. Later even the tech support agent helping me had trouble and even asked me if I had changed it on my government paperwork. (Yes, I did, sexist coder that wrote this form, I did.)
  • Next is my call to the help line listed on their web page. They have separate numbers for account help and tech support. The line is automated at first and is designed to help without connecting you to a real person. I needed a live person. It took two minutes to get connected to live help, which is not bad in my experience.
  • Again, the script given to assist customers was almost the opposite of help. It took another thirty two minutes to suss out that the only way to get past the lack of "enrollment ID" and the last name business was to apply over the phone. Now, the person I actually dealt with was heroic in trying to stick to the script. She also actually wanted to and eventually did help.
  • At one point I had to give the "I have worked in tech and tech support, I would not be bugging you if anything I could try worked!" speil. 
  • It was assumed I wanted the 250 minute plan, the others were not mentioned.
  • Applying over the phone is tedious, repetitive and irritating. If you can use any other method, I recommend quite strongly that you do so.
  • So now the wait is on! 7 to 10 business days should produce an Indiana Lifeline Assistance handset...

Wednesday, March 4, 2015

Farewell Ferguson's Faux Friends

So the apologies from all the fucks bleating so wrongly about Ferguson, MO's protesters and racist cops and racist policies and tactics and racist everything should be rolling in any minute now...

...yep, any moment...

Well.

Because they were wrong. So very, very wrong. 

When you back up bad cops you hurt good cops. You leave impoverished, under privileged, under siege communities feeling like people only care when they can cluck their tongues about "riots" and "looting" and "boot straps" and "the race card" and "working harder." 

You see, in the uniform, no one can tell a good cop from a bad cop. Because "decent folks" and "good cops" bend over backwards to protect bad cops. Maybe they watched Thin Blue Line too many times at too young an age. Maybe they watched COPS too many times at any age. Maybe they just think that only those with the intent to actually protect and serve are drawn to the job. But that much unsupervised power over fellow humans is a draw to the wrong kind of people.

If you defended Ferguson's power, you need to apologize about Ferguson. Unless you still do not think the cops were wrong. Then just shut up, because you are a racist.

Personal notes: not a lot of links for a while as I am getting used to a mobile platform more kind to my shaking hands. 

Tuesday, March 3, 2015

How to Restart a Blog

I do not do resolutions, but I do try to reevaluate my goals and recommit myself to those goals. You, Dear Reader, have been on my mind a lot more than I have shown during my hiatus. So, what happenings have happened or are happening?

I just celebrated my first year of no smoking after switching to eCigs. My nicotine intake is less than half of what it was when I started. I was using 36mg juices at the start, and vaping them like there would be no tomorrow. Now I use 18mg to 12mg and actually put them down once in a while. I am currently using a VTR, an Eleaf iStick and an SVD 2.0.

(My spell check is having fits with the above, my apologies for any actual missed typos!)

The family is doing well, despite the challenges in their individual lives. Minion One has technically become an adult, although she is still a high school student. Minion Two has found her groove, I think, and is shining brightly. The menfolk are getting along with life although they too face some challenges.

My Buddhist studies are going well and I am committed to them. Wrestling with my avoidance has been the biggest challenge, as one of the three main components is community (sangha).  

My health has maintained, although it has included a new problem: antiphospolipid syndrome. This has not increased my overall disability, although it is more meds and much more worry. 

I am closer to my idea of a healthy weight after getting better pain management. I had to finally tell my doc, "I am gaining weight because I am not moving and feeling gross and indulging in food, one of the few pleasures I can enjoy just like everyone else. I think if I hurt less I will move more and eat less." That all proved to be true, and although the profession is still moving more towards criminalizing seeking pain treatment, she listened and I started moving more and shedding unneeded and unwanted pounds.

So let me put this out to you before I change my mind.



Wednesday, June 11, 2014

Doing the Disability Drag (Get Your Cripface on!)

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


A blond, blazer-ed PatientC trying to look casual for a wheelchair picture.
NOT PICTURED: CRIP DRAG.


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

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

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

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

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

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

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

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

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

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

Tuesday, June 10, 2014

This Post May Be Crap

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



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


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

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

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

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

Wednesday, March 5, 2014

In Case You Noticed

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

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

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

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

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

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