Amazon's Deadly Covid19 Policy

Me, guarded by my loyal pittie, Nissi. 

A combative post. Here, have a nice picture of Nissi & I on our couch.

Times are tough lately. Covid19 is still killing us, and there is no end in sight.

Do not inject disinfectant into your lungs our anywhere else! For fuck's sake, people. 

The 'helpful' effort in question is Amazon's policy to cordon off PPE (personal protection equipment) to be sold only to hospitals. The public version of this on their web page can be read here and more specifically, here. You do not have to read it now, once you go looking for gear you might need you will be sent to this over and over again.  The issue discussed here is not just a problem at Amazon and it's holdings, this kind of decision making is all over the place. Amazon is the place where I am struggling with this the most. Some policies meant to help just make things worse. 

I am interested in purchasing masks. No I am not a hospital or medical practice oriented business. I am someone struggling with auto-immune deficiencies. So I am a person that needs this kind of help more than a regular person with a regularly working immune system. According to my doctor, general medical guidance, and specific lupus guidance. 

Other sorts of folks that need extra protection: cancer and chemo patients, diabetics, people with MS, ME, SLE/lupus, organ transplant recipients, people with replaced joints, older folks... Remember that scary list you hoped would not include you or your loved ones? Yeah, that list. If you are not on it, someone in your life will be, you can count on that. Usually we do not afforded any extra thought or notice, but we are in fact extra vulnerable.

Perhaps in order to get away from the fact that Amazon's system initially allowed predatory market controlling behavior on the part of speculators, they have gone too far in the other direction and currently allow no sales of PPE to the general public. There are no exceptions for people that may be extra vulnerable and trying to stay out of the very places that can purchase PPE.

I want to say that again: in the middle of a plague Amazon will not let sick or disabled people to buy lifesaving gear.  No exceptions, no more finely tuned policy in sight. 

Maybe they should go ask some NYC nurses if they would rather see people like me in a mask in public or clogging up their emergency room. Sure, cloth masks are now recommended for use by the public but that only protects you from me - and I already know I do not have it. How? Because I went through a two week quarantine after suspected exposure at my doctor's office. My family and I started staying home when it was first recommended, and we will be at home except for essential errands, until the stay at home orders are no longer recommended.

It was easy to find gloves, gowns, and shields on their site that I could buy. Hell, I did buy some gloves. Masks are blocked much more stringently. 

This is an easy fix - put account limits on monthly purchases. Require contact through the standard chat help windows or even phone calls with issue trained account help representatives. Tag accounts that do buy restricted gear so that they come to company attention if they try to sell masks later.

Contacting Amazon got me sent back to the same document listed above, over and over again - even if I start the conversation with "I read your statement regarding PPE and #Covid19..." 

Next time you see those tallies of the sick and the dead, maybe you will wonder along with me, about how many of those folks would still be here if they could have protected themselves.

Yes, I am aware of the stated goals of leaving this gear for purchase by hospitals and I do somewhat agree. Nurses, techs, and staff need the right gear to to their job. That point is getting a lot of play everywhere, but for the record I want people to know about this particular consequence of knee jerk over reactions. Sick people wanting to avoid Covid19 are not the cause of the shortage: US government corruption, neglect of the emergency stockpiles, for profit hospitals using "just in time" supply chains, the wicked looking to corner markets... That is one of many reasons why people are dying for the lack of PPE.

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. 

In Praise of the Meatsack

PatientC, holding a candle lit for mourning.

I am not supposed to love this meatsack. It has been fat. It is now merely slightly overweight. It has born children, it has run races, it has made music, it has been set on fire for the voyeuristic pleasure of the crowd. It has run miles, biked, skated, and driven even though now it is disabled. It has survived use, misuse, the neglect and punishment of loved ones. It has reveled in the love and affection and romantic attention of other loved ones that actually loved me back. Some days it fails the simple task of truly getting out of bed, except to change the clothes on it, make the bed and them snuggle back into nap blankets for the day.

Yep, I refer to human bodies as meatsacks (or meat bags, much love to HK47 & SWTORII).  Few things eat us, but that does not make us any less meat on the hoof. Meat at the top of the food chain is still meat even if it is rarely tasted. It is okay, though, this is not a bad thing. It serves as a reminder that there is little physical difference between our fleshy engines and that hamburger package that expired today but is probably still okay to eat... I believe it is a fairly adequate description. 

Frequently I find that folks, especially disabled folks like me, can end up looking down on these meatsacks, but I happen to be fond of mine. We are not supposed to love our meatsacks. We are not supposed to think about the fact that tomorrow is not guaranteed. Hell, that next breath is not assured, but we like to think that it is. But we are supposed to feel that our meat is bad: too big, too small, too little, too tall, too voluptuous, too slight, too pale, too dark... we are never just right as taught by the world, our schools, our families, our faith, our neighbors. 

Although meatsacks are unreliable they are the way we interact with the universe. Consciousness is not separate from flesh but laced through it, inseparable from it. Meat is our interface with each other, our easiest and most complicated tool, our first tool and our last tool. Yet we disparage, disregard, and degrade it at every turn. 

I do not believe that we are trapped in this meat, but installed in it, built by it, nourished with millions of sensations every day from it. But USisans, Westerners, we are taught to hate it. We use our meat to share our love, our fear, our joy and our pain - we have no idea what we truly are without out meat but I know this: it would not be the same, it would be less.

Common Christian thought teaches that we should hate our bodies. Our reproduction & our mortality are products of Original Sin - only possible by the act of misbehaving in this meat. So we hate and mortify the body to become closer to the Passion experienced by Christ in order to know and love Him in order to enter Paradise and know God. 

Buddhism treats the mind, body, and soul as one item, inseparable. (As I understand it, from my baby beginner Buddhist tuffit.) This item is inseparable from the world it inhabits. This makes much more sense to me. 

All that to tell you, dear Reader, that no matter what the world tells me, I love this meat bag and all it's faults. I try to see it for what it really is, moment to moment, but I cannot imagine trading it or the adventures it has given me for any other meatsack, ever. 

On Language

A few years ago, my family had a falling out with what we thought were good, solid family friends. Family conversation often turns to subjects of social justice in our home, and most guests are not only used to it but appreciate the ad hoc safe space we host. But these friends were sulking at every visit. Turns out, they hated us because we reminded them that oppression still existed, were propagating issues by addressing them, or some such bullshit and grew more resentful and angry at every visit. 

I wrote a lot during it and about it, and a lot of the discussion about language is extremely applicable here. The names, etc, have been obscured to protect those that have yet to actually develop the personal evolution they think they have achieved. Editing for clarity of thought has also been attempted, Dear Reader.

See below for description and request.

Description: this is a pink US flag design saying the following: In Our America all people are equal, black lives matter, immigrants and refugees are welcome, disabilities are respected, women are in charge of their own bodies, people and planet are valued over profit. Diversity is celebrated.

"Of Dogs and Lizards" was frequently cited during the original conversation, I want to credit it here. If you know the credit for the graphic above, I would be thankful for letting me know so I can give due credit.
______

It took a while to put together what happened, in a bigger picture sort of way. The story: I posted a link that stated using the word "lame" was not only inconsiderate or mean, but discriminatory and prejudiced. For having the audacity to reinforce the idea that people with handicaps are indeed humans worthy of decent treatment, I was isolated and shamed. I was the card while others scored about seven Bingos (disability and some sexist and racist bingo, too).

What this lead to, the point I am getting to is incredibly hard to think, let alone put to words on a screen or say out loud: I was discriminated against. I was treated with prejudice... by people I love. These people had standing invitations to our home. They supped with us. They were around our children. NOTE: Dear Reader, this list could be much longer but then starts to get both tedious and very specific, which is not intended. The intent is to share the thoughts I generated during this mess.

This was a little thing. Such a little thing generated such intense shame and anger and embarrassment and humiliation from me, such rage, hate, and discontent at me. I am not looking away. I will not forget. I will not withdraw. I will use this experience to kick myself back to the things I want to do - to actively fight exactly this sort of thing. I will be more empathic when someone else talks about facing bigotry. I will insist to myself and others that I am not less human than they.

There is a simple reason to talk about "politically correct" language. Every time there is a language & hate issue in US culture, we talk about it for maybe a few days and think we are done, that we did our collective penance. USians are usually free to say what we like. Other people are also free to think what they like and say what they like about what we say. Advising someone not to use offensive language serves a purpose: to separate the assholes from the ignorant or unwitting. Flailing about your right to express yourself while trying to take that right away from someone else is Palin-esque at best.

If you know that the use of some language hurts someone else and you still use it - you are an asshole. You are, of course, free to be an asshole. But if you actually care about how other people think and feel, you will stop. This lets the rest of us know whether you were simply uninformed, or a jerk-ass.

When told that you are using language considered racist, sexist, cis-ist, heteronormative or homophobic, able-ist, class-ist, or otherwise offensive to someone, please take a moment to think. If you are not sexist, racist, or otherwise deliberately offending, then just stop it. Sit down so we can see who the real assholes are, please. Or keep standing, if appropriate, it is appreciated. The same benefit is not denied to you, but rather explicitly given.

I simply do not see trying to be human to my fellow humans as the burden that some do. Yes, it is hard to keep track of all the things that folks say to one another to hurt, demean, humiliate, taunt, disgrace... So when you do hurt someone by accident or ignorance, apologize with some grace, make a note of it and move the fuck on without complaint. If you want to be seen as that sort of person instead.

I do not suggest that I or anyone else tell anyone what to think or say, so I do not know where the jack-booted Thought Police accusation originates although it comes up time and time again by those wishing to do and say what they wish without allowing others to do the same. Why is one cherished freedom and the other so damn oppressive?!? They are the same right, just in different hands.

"All language is oppressive to someone" is both a fallacy and a cop out. As long as one subscribes to that, then one never has to care or try. I am better than that. Dear Reader, I am already sure you are better than that. But if the idea that one may say "that thing you said or did hurt me in real ways" drives you to monk-ish silence or a career as a mime, you do you!

An "ally" that constantly steps on your foot and blames you for hurting, or for having the audacity to say "OUCH!" is no ally. They just want the warm fuzzy of thinking they are an ally with none of the effort.

No one blames anyone for having privilege. None of us get to choose the circumstances of our birth, our families, or pick the culture we were born into. Sometimes it really is just that simple. Political correctness holds us responsible for what we say and do, and is avoided by those that cannot stomach being responsible in that way.

No one is immune from accountability. There is nothing about talking and learning and advocating for racial justice that makes us exempt from saying something racially hurtful. Hell, there is nothing about my currently disabled status that means I am exempt from saying some shit that someone with another disability may find offensive. (It happens.) That was part of the point - we are all going to occasionally fuck up. We all have some privilege, and we are all personally responsible for doing our best not to oppress our fellow human beings. There is nothing about being a woman that makes me immune to internalizing hateful messages and using them to hurt someone. There is nothing, but my knowledge that we are all in the same soup and need to stay vigilant about the ideas we allow to roost in the rafters of our world view.

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.

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.

Ally Maintenance and Upkeep

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

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

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

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

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

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

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

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

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. 

Bad Cripple: Miley "Critics" Getting It Wrong

So, Miley Cyrus is getting support and defense from some damn odd corners over the "tiny strokes" joke.  The people that have experienced TIA/micro-strokes and their allies are getting the "you humorless fucks" bullshit from such people. I heard or read four just yesterday, before I even engaged with this story so this mean ignorance is not isolated enough to blame just one or a few jerks with links. 

Well, when a micro blood clot or dozen takes away your children's name or you ability to do math or tie a shoe - you can come and tell me how fucking hilarious it was for you. When your spouse wakes up and gives you a blank stare or screams because they do not remember you, tell me how fucking hilarious you both found it. When it is followed by massive stroke, you can tell me how it is to laugh while drooling into a cup.
Oh, and for the people whining that the disabled should give up their rights to peace and privacy and "educate" the public, the UK Stroke Association did that in their letter. Educate your own damn selves, quit telling people that are having enough trouble with strokes and all to Google That for You.

I am sticking with the "not funny" camp that neuro-atypical people get shoved into when no one wants to validate our experiences. This is not the only incident of ableism of hers going on right fucking now. There are a lot of folks trying to let her know, like Sinead O'Connor, that this is unacceptable, but she keeps doing it anyway with the minimum, petulant apologies. Mainly because a bunch of heartless fucks that think strokes will never happen to them are backing this bullshit. This is not killing Hannah Montana, this is socially irresponsible fucking garbage.

If you want to insist this kind of oppressive bullshit is funny: fuck you. It is fucking brain damage you petulant pusillanimous fuckwits. It takes away random parts of your life, some you will never get back and can signal more massive strokes. I am almost ready to say that I am happy to hit folks with a baseball bat until you get some yourself so you can know how not fucking funny it is. Sympathy via the application of sudden, satisfying force. 

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.

One Less Invisible Oppression

Take a good look at me:

There, that was not so bad. Pictured is head and shoulders shot of a nearly forty, blond, pale white woman with glasses and a mildly challenging expression right after a free makeover.

The last thing you probably see is oppression. You do not see illness. You do not see disabilities. You cannot see bisexuality. You will never see poverty, if I can help it. Me and mine will only show you polyamory when we choose. You cannot see non-Christian in a "Christian" nation. You think you see a woman, but only because I present a woman to you, but you really have no idea. You never really do with anyone - get used to the idea.

Now that the celebrations are mostly over, we can finally start to really understand what happened with DOMA and Prop.8, what the rulings mean now and to start to understand what they may mean for the future. My favorite part was watching the homophobes start to sound off in front of news cameras and watch the cameras turn away from them to the successful DOMA and Prop.8 teams as they walked down those famous stairs and raise their hands high.

As far as I understand it, the Court "punted" on Prop 8, a term usually used when they make a ruling that appears to be noncommittal  But the verdict that the claimants (random straight homophobes that picked up the case when the state of California washed their hands of it) could not claim injury to pursue the case. I think that verdict is anything but neutral, finally saying that straight people cannot claim injury when gay people get married.

I think this punt matters quite a lot. As much as the much more decisive verdict striking down DOMA. The dominoes are starting to fall, and with gay families on military bases inside of bigoted states, and gay families moving from states that honor their citizenship to states that do not... It is only a matter of time. That time feels like forever when it is your family waiting it out, I am sure.

Now the religious fundamentalists are using families like mine, poly families, as the next spooky threat to marriage. Although they have not given one indication as to why it would be bad for the State. It would definitely be a Biblically supported arrangement if I married both the Menfolk if our genders were reversed, but that was never really the point. 

At least in California, and according to the federal government, there is one less invisible second-class citizenship status. 

Note: I am as much a lawyer as a doctor, which is not at all.

Fuck Fair: Favoring the Injured (On Safe Space)

There are a lot of places that need your time today, thank you for spending a moment or two here. Please see the Red Cross if you want to help out Moore, Oklahoma. They will need your help for a long time coming. So if you could not donate the first time around, like me, keep them in mind for when you can spare something to help, please.


A “safe space” is a convention where a chat room, a comment thread, a blog, or what have you is considered more safe than the average Internet site for expressing thoughts, experiences and conversations regarding societal oppression, patriarchy, or other designated topic, grouping of people, or sharing of an idea.

Safe space is not about not getting hurt. No one can police for everything. It is knowing that you are in a space where it is safe to get hurt.


There's no OED for social justice, so we all need to spell out what we mean when we say things like "safe space." I have to be honest about conversations here: I cannot promise folks will not get hurt. Somebody is not going to know "g*psy" is an insult or that a band name is triggering or whatever. I do understand that sometimes genuine mistakes get made - and I will judge those as they occur. We are people, mistakes get made and when your wounds are out they sometimes get opened.

I say this again: fuck fair, favor the injured. In the rest of the world, people with privilege are actually fucking privileged and can have their say as they will. A safe space puts the dis-empowered on the at least the same level, with the same expectation of opportunity to speak, to be, to live.

You give people space, let them know you are there, you listen when they are aggrieved. You care. You do not just let them know that you care, you fucking do it. Give other people reason (since the injured party should never need to) and opportunity to apologize and maybe even go learn more and be a better person. I give the injuring the opportunity to grow in a way that is not hurtful to the injured... And if they do not take it, fuck ‘em.

Bigots and cads and shit stirrers get tossed. Here, that is by my discretion alone at this point. Mistakes among the rest of folks means giving genuine opportunity for real recovery, and for folks learning - really learning, real space to do that too. Probably not together, though. But they voices dimmed out there are favored here, and that is that.


Finally, if need be, I am comfortable asserting that I Am The Bitch Boss Here if needed. A lot of this is hard to put down in solid rules or guidelines. If you are here, then you have decided to trust me as the arbiter of that. I am perfectly comfortable with the fact that you can go almost anywhere else and say what you want. More power to you, as if you need it. I stand (sit) behind what I have written here and elsewhere on the subject.

This Knapsack Here

The other day I was trying to be supportive in a chat room discussion about the issues that many black and brown women regarding feminism in general, particularly first and second wave feminism. It was a great talk and it seemed to me that folks were able to express discontent freely and talk about how intersectional feminism was still not enough of a force to reach them, let alone include them.

I really wanted to talk about how the disabled were right there too, in line for forced sterilization in the beginning. And later. And still now.

I wanted to talk about how bisexual and lesbian and trans and queer women have struggled for recognition in the women's rights moment, too. How we were institutionalize and lobotomized in this country (US). 

I wanted to reach across the room and connect on how poor women are still struggling to get recognized in an era where they are still ignored and pathologized. Where the poor get lost in the shuffle.

It is hard to say that you are supporting someone's right to express themselves without interrupting them. So I stayed quiet, offered reference points as to which wave of feminism could be fairly characterized as doing what (human footnote machine!), and otherwise reading and learning and feeling what other people were writing. They hit a lot of the problems I have with the feminist label, too. Maybe I did the right thing, maybe not - and there is not always someone that will tell you. I did not have one this time, and I do not expect anyone to take on that job, but I appreciate it when someone does.

For all my sympathy, for all my intersectional connections to issues inside of the movement, I have a distinction: I am white. I am a whiter shade of pale. I am Whitey McWhiteson. That whiteness shields me, even with the shield seems pretty pathetic. As a white disabled woman, I am at an advantage over an Asian American disabled woman. As a white bisexual, I am at an advantage over a Hispanic (Latina) American bisexual woman. That is my knapsack, even if it is sometimes pretty useless feeling, it is always in effect.

I would not fault the folks that would never have that conversation in front of a white woman proclaiming feminist tendencies. There are some disability issues that I do not share with the TAB unless they are family and need to know. There are some bi experiences that are pretty exclusively understood by other bi folks. Poverty is a very specific way to try to live, and those that have never struggled with money seen to have a very hard time even understanding the basics, given the rare occasion that they seem to try to understand at all.

I did not feel left out of the conversation. I felt honored to be there. With all of feminism's problems, I was honored to see it, glad to offer what little I could and otherwise bear witness with no let or hindrance. 

(The links are kind of disjointed, and I am unhappy with them and just stopped using most of them. I am just going to leave my thoughts here and let them stand as they are.)

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!

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!

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.

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

On the Word "Lame"

Transcript below the break.

Thank you to everyone that has sent me notes about this video. Your thoughts are greatly appreciated by me.

It is nice to be back.