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.
I am PatientC. Welcome! This is a disability oriented blog where issues and intersection are discussed at my whim and with varying degrees of humanity, snark, and intensity. Content can be adult at times, farcical at others.
Thursday, December 19, 2013
Friday, December 6, 2013
Dear Madiba
Dear Madiba,
You did not know me, Nelson Mandela, but I knew you. In the small white Indiana town I grew up in, there was little talk of racial equality. My mother spoke of it, and brought books and movies into our tiny home that supported such causes. Even with everything that happened to us and between us, that is one of the few things for which I thank her.
But I remember you. South Africa's campaign for equality somehow made it into my life, and my heart wrapped itself around you and your cause in a way I had never felt before. I was a young teen, and I had just been introduced to the Civil Rights Movement of the 1960's here. What was going on in South Africa to blacks and allies chilled my young bones. But there you were, resilient, an advocate for peaceful resistance after using violence.
You lived! Although you were jailed when I first heard your name, you were alive! Here in the US, our most successful advocates for equality and peace were laid low by the tyranny of white supremacy - it's lackeys using death as their political tool. Violence, prison, slavery, TB: none of it had taken your life or your principles.
In four short years you went from 46664 to Mr. President, ushering in not just a new country, but a new era. You and your movement showed us that peace could be made under any circumstances. It took incredible fortitude and forgiveness, but equality and peace could be born in the shadow of an apartheid nation. You did not do it alone, to be sure, but your strength and serenity were the midwife for this incredible birth.
Even in all your greatness, and your Presidency, and your Nobel Peace Prize, there was more. You remained human, even as we tried to deify you.
Your quest for peace and justice reached far beyond South Africa. Even in a town that had only recently stopped allowing Klan rallies at the courthouse, your presence reached even there and touched kids like me. For that I could never give adequate thanks, but I do thank you. You and your country was the first cause for many advocates and activists. You lit our hearts and moved our hands and for many of us, even as our causes changed, never stopped.
Thank you, Madiba, may you know whatever peace you dreamed would be waiting for you.
Peace and love,
PatientC
You did not know me, Nelson Mandela, but I knew you. In the small white Indiana town I grew up in, there was little talk of racial equality. My mother spoke of it, and brought books and movies into our tiny home that supported such causes. Even with everything that happened to us and between us, that is one of the few things for which I thank her.
But I remember you. South Africa's campaign for equality somehow made it into my life, and my heart wrapped itself around you and your cause in a way I had never felt before. I was a young teen, and I had just been introduced to the Civil Rights Movement of the 1960's here. What was going on in South Africa to blacks and allies chilled my young bones. But there you were, resilient, an advocate for peaceful resistance after using violence.
You lived! Although you were jailed when I first heard your name, you were alive! Here in the US, our most successful advocates for equality and peace were laid low by the tyranny of white supremacy - it's lackeys using death as their political tool. Violence, prison, slavery, TB: none of it had taken your life or your principles.
In four short years you went from 46664 to Mr. President, ushering in not just a new country, but a new era. You and your movement showed us that peace could be made under any circumstances. It took incredible fortitude and forgiveness, but equality and peace could be born in the shadow of an apartheid nation. You did not do it alone, to be sure, but your strength and serenity were the midwife for this incredible birth.
Even in all your greatness, and your Presidency, and your Nobel Peace Prize, there was more. You remained human, even as we tried to deify you.
Your quest for peace and justice reached far beyond South Africa. Even in a town that had only recently stopped allowing Klan rallies at the courthouse, your presence reached even there and touched kids like me. For that I could never give adequate thanks, but I do thank you. You and your country was the first cause for many advocates and activists. You lit our hearts and moved our hands and for many of us, even as our causes changed, never stopped.
Thank you, Madiba, may you know whatever peace you dreamed would be waiting for you.
Peace and love,
PatientC
Thursday, December 5, 2013
Disability and Fitness
or: How Fit Can a Cripple Get?
This year I had four goals to work on, and have made sufficient progress on two of them. So maybe I can only work on two life altering goals at a time. That is still pretty good, I think. Fitness was one that I failed miserably this year, and I cannot really afford that kind of mistake. You know?
I have successfully completed exercise programs before I was super sick, but was on the sick track and was not aware that all the little things were going to add up to big, systemic, life altering problems. It was hard, and I had failed at some before and since, but all the adults in the household were on the same workout bandwagon that one good time, and that helped a ginormous amount.
The pillars of fitness are more like spinning plates for sick folks like me. Figuring out what you need to work on can involve consulting with multiple doctors and maybe a physical/occupational therapist or two. I cannot afford to do exercises that may help one thing but make another worse. Habit is nearly impossible because one never knows when a flare is coming on, how long it will last, if a flare is coming on will activity activate it? Some flares you can still get some things done, but some flares are incapacitating. All of this can make progression nearly impossible.
Caring about my health is a no brainer when I spend my days trying to piece together enough strands of healthiness to get by each day. I find that I am much more aware and connected to how my body is doing every day that non-sick/able-bodied folks. They seem to be able to get through a day without checking in with their bodies and their health. Hell, I have to check each day to see if I have a doctor appointment!
How do I even measure fitness in this physical miasma? Will having stronger, tones muscles give me the type of health I will need to fight my health issues as I age? Heart healthiness always sees good, but sometimes stairs wind me and bad balance days can make a simple, one story staircase a nightmare of risk and cost benefit analysis. Well, I am going to start at just trying to do something and go from there.
So, as you can see, returning to a good level of fitness is not going to be an easy task. I am doing what I can to remove obstacles I have put in my own way, like smoking and a sense of futility. But I think it is going to take a lot more than that. Getting more fit is going to be one of the things on my New Year's resolutions. Again. But I think I have a better shot at it this time. Hell, my smoking is... well, I will tell you about my smoking here soon. Last year's list is going out 2 for 4, so I call my odds pretty good, maybe even... even.
This year I had four goals to work on, and have made sufficient progress on two of them. So maybe I can only work on two life altering goals at a time. That is still pretty good, I think. Fitness was one that I failed miserably this year, and I cannot really afford that kind of mistake. You know?
I have successfully completed exercise programs before I was super sick, but was on the sick track and was not aware that all the little things were going to add up to big, systemic, life altering problems. It was hard, and I had failed at some before and since, but all the adults in the household were on the same workout bandwagon that one good time, and that helped a ginormous amount.
The pillars of fitness are more like spinning plates for sick folks like me. Figuring out what you need to work on can involve consulting with multiple doctors and maybe a physical/occupational therapist or two. I cannot afford to do exercises that may help one thing but make another worse. Habit is nearly impossible because one never knows when a flare is coming on, how long it will last, if a flare is coming on will activity activate it? Some flares you can still get some things done, but some flares are incapacitating. All of this can make progression nearly impossible.
Caring about my health is a no brainer when I spend my days trying to piece together enough strands of healthiness to get by each day. I find that I am much more aware and connected to how my body is doing every day that non-sick/able-bodied folks. They seem to be able to get through a day without checking in with their bodies and their health. Hell, I have to check each day to see if I have a doctor appointment!
How do I even measure fitness in this physical miasma? Will having stronger, tones muscles give me the type of health I will need to fight my health issues as I age? Heart healthiness always sees good, but sometimes stairs wind me and bad balance days can make a simple, one story staircase a nightmare of risk and cost benefit analysis. Well, I am going to start at just trying to do something and go from there.
So, as you can see, returning to a good level of fitness is not going to be an easy task. I am doing what I can to remove obstacles I have put in my own way, like smoking and a sense of futility. But I think it is going to take a lot more than that. Getting more fit is going to be one of the things on my New Year's resolutions. Again. But I think I have a better shot at it this time. Hell, my smoking is... well, I will tell you about my smoking here soon. Last year's list is going out 2 for 4, so I call my odds pretty good, maybe even... even.
Monday, December 2, 2013
Our Poly Family
One of the things I want to do with PatientC that is not medical or disability related is to get more material out here that is about real life poly families by talking about mine. I was asked some questions to help with a friend's paper, and that got me thinking. You know what happens when I get thinking, I post it here for your potential cerebral pleasure!
Answers to questions asked for a friends’ paper on poly families:
Answers to questions asked for a friends’ paper on poly families:
- Okay, that is some list! But it does look like a very good place to get started, good job there. =) I may use what I write here as the skeleton for a blog post unless that would weird you out. I think my responses are in order, but I may have missed some {questions} - if anything does not seem to synch up, feel free to ask for clarification.
- Yes, as far as the Minions go, we have always been this way. The only change was when we all moved in together.
- They have always known {we were a poly family. Well, at least since they could understand words like that}. Now, if you are asking when did they figure out when we were "romantic" by a more complete definition of that word than you have when you are three, probably a year or {few} after we started living together, so 8 years ago, maybe? They would have been 9 and 7, I think.
- I raised them with the idea that although most adults are taught they can only romantically love one other person at a time, I practiced a romantic love that was like my family love. They both knew that I love them completely but differently, and that was how I felt about their Dad and the Boyfriend. Now, when that idea was challenged at school One came home saying "Mary's mom says you cannot have a husband and a boyfriend at the same time." I said, "Well, tell Mary to tell her mom that indeed I do and she is a close minded bitch!" Then we all laughed and I delved more into definitional polyamory to help them explain to what friends they decided were able to handle it.
- They {my girls, otherwise known as The Minions} seem mostly nonplussed. They do use it as a litmus test to see if a friend is going to hang around after they find out, I suspect. One has stated that she will probably not be poly, that love seems complicated enough to her right now. Not that she was judging us, she wanted us to understand. =) Two is a little more militant.
- Yep, we are who we are wherever we go and whoever we meet (representatives of the state being the exception {and we tone it down a bit at school functions}). We will usually wait to see if a neighbor is staying or if we like a new group well enough to hang around and need to explain if it is not plain at the start.
- For the most part, they {our neighbors} do not seem to care. If they disapprove, they keep it to themselves. Some of our neighbors thought it odd at first, but they are mostly older black matriarchs that care more about our kids and our yard being well tended than what we do in bed. We joke that we are those "crazy crackers on the corner" and get along pretty well, now that I think about it.
- No, they {the Minions} seem to have a fairly easy time of that. They have been teased and rejected for not being Christian. Hey, that may explain it: the people that would judge their poly family are already blown off on the religious question and never get as far as their poly family. And family structures were already becoming more fluid before the economic downturn, now everyone has extended family living with them or broken up partners still living together... I am not saying that the nuclear family is dead, but it has been coughing up blood as far as I can personally tell.
- We are all supportive of the Minions. G and I, other than a six month break at one point (long story), have been together for over twenty years and he has always been an accessible Dad. {The Boyfriend} and I started our odd journey right before I was pregnant with {the eldest}, so he has always been around for them. One of the perks of ploy is that the girls always have a grownup around. And one of us almost always finds a way to relate to whatever they may be going through at any given time. While not being able to sign things for them or stuff like that, {the Boyfriend} has always been "an adult that should be respected and listened to like Mom and Dad."
- No, {on me being open and poly} I have not seen anyone {else} seriously for years. Being sick complicated that issue so I do not know if I would have otherwise. But they would have needed to be cool with my home life and my home life would have needed to be cool with them if it was serious. I have had sex with a friend or two, but with no eye to changing standing relationships.
- Umm, hopefully that is a good start. Whatever strikes your fancy to ask about or discuss is okay so far, so feel free! {Same goes for you, Dear Reader, feel free to chat below!}
Tuesday, November 19, 2013
Things that Make My Life Easier, Part Five
Here is a short list of pro-gimp stuff that has helped me out lately. All of it purchased by me, as I have promised I will always tell you if I have a stake in a thing I recommend. Sometimes I do this with single items, but here I am starting to gather small items of interest too. I know I am asking for trouble by labeling this with a number, but I am feeling optimistic!
Shop Tibet: this is an amazing store in Broad Ripple, Indianapolis. They do not have a web page as far as I can tell. This is a shame because they are a great store, with tons of stuff made by Tibetans, supporting Free Tibet efforts. There are plenty of things to find there, including a small but solid selection of books, prayer shawls (I love mine!), dharma items, jewelry... wonderful stuff all in one spot. And I did not punch the fellow patron that asked, "Does Tibet have winter?" but I did offer my sympathy to the lady that fielded the question.
Genie Bras: all the support of a sports bra, with the ability to wear it like a regular bra. No wires. I am not a big believer in "As Seen on TV" although the products fascinate me for some reason. This one is a solid, practical, and comfortable. Note: you do have to put them on over the head, so beware if that is a difficulty for you. The Minions and I got ours at CVS for about $20 for a pack of two, one black and one ecru-ish. They are great no nonsense bras. Note for wearing: they do not really offer much of a cleavage/decolletage view so think about your wishes in that department before you take it out of the drawer.
Dream Water: this is a sleep aid in the form of a zero calorie drinking shot. They make a lot of claims, but all I know is that it worked. It was not as hard hitting as a prescription sleep aid, and I woke up feeling rested and alert. I did not remember my dreams any better, but maybe that comes with time or is a pipe dream itself. Make sure you have time for a good sleep, 7-8 hours, if you want to use it.
Shop Tibet: this is an amazing store in Broad Ripple, Indianapolis. They do not have a web page as far as I can tell. This is a shame because they are a great store, with tons of stuff made by Tibetans, supporting Free Tibet efforts. There are plenty of things to find there, including a small but solid selection of books, prayer shawls (I love mine!), dharma items, jewelry... wonderful stuff all in one spot. And I did not punch the fellow patron that asked, "Does Tibet have winter?" but I did offer my sympathy to the lady that fielded the question.
Genie Bras: all the support of a sports bra, with the ability to wear it like a regular bra. No wires. I am not a big believer in "As Seen on TV" although the products fascinate me for some reason. This one is a solid, practical, and comfortable. Note: you do have to put them on over the head, so beware if that is a difficulty for you. The Minions and I got ours at CVS for about $20 for a pack of two, one black and one ecru-ish. They are great no nonsense bras. Note for wearing: they do not really offer much of a cleavage/decolletage view so think about your wishes in that department before you take it out of the drawer.
Dream Water: this is a sleep aid in the form of a zero calorie drinking shot. They make a lot of claims, but all I know is that it worked. It was not as hard hitting as a prescription sleep aid, and I woke up feeling rested and alert. I did not remember my dreams any better, but maybe that comes with time or is a pipe dream itself. Make sure you have time for a good sleep, 7-8 hours, if you want to use it.
Monday, November 18, 2013
E-cig/Vaping Slang, Part One
If you follow me on various Internet over-sharing sites (micro/blogging places), then you know I am actively switching over from smoking Djarum Special Cigarellos to e-Cigarettes and mods. It is working, and although I have not completely made the switch, I am already seeing benefits and continue to pursue a complete switch over. The vaping scene can get quite confusing to folks new to it, because the scene already has a large vocabulary of slang and code. I want to help with that.
Why do this here, on a disability, politics, and pop culture site? Because I think that it is important. Because I am personally using various vaping devices, with my start in them being in an interest in better health and not dying of various smoking cancers and other ill effects. Because I think it is important. Because I think it is a scene that could greatly benefit me and other folks with disabilities. Because I think it is an especially good idea to switch particularly if you are of ill health or malfunctioning immune systems. Please understand that these points are also my own opinion and I am not a medical professional.
So here are some random eCig/Vaping words/phrases/ideas with their meanings. I plan to do some more later. This is in no particular order. Feel free to offer corrections, additions, and comments below!
eJuice - this is the center of the Vaping world: the liquid used to create the vapor inhaled by Vapers.
Frost/Ice/Cold - every eJuice labeled as being cold or cold in some way usually means that it contains mint (rare) or menthol (common) flavoring. This is just as important if you are looking to avoid it as if you want it!
Spinner - a spinner is a battery with voltage control input manipulated by a marked disk on the bottom of the battery. The marks are usually on the body, and you change the power by turning the ribbed (usual) disk to the desired mark on the body. While the marking methods can differ, this always means that voltage control is changed by that "spinning" disk.
Analog - a typical cigarette product.
Vape - to vape is to inhale the atomized vapor created by eCigs and modes. It is to eCigs as smoking is to analogs.
Vaper - an eCig user. Also: a label worn with pride and with a resistance to the status quo of nicotine delivery.
Vapor - the atomized mist created by eCigs and Mods.
Mod - a vaping device is more than a decorated battery. Sometimes the actual battery is a separate product, contained within the mod. Mods are products that have more finite control over your experience, may have digital displays, and can come in very utilitarian or highly stylized models. Mods can also refer to vaping set ups altered by DIY vapers.
Why do this here, on a disability, politics, and pop culture site? Because I think that it is important. Because I am personally using various vaping devices, with my start in them being in an interest in better health and not dying of various smoking cancers and other ill effects. Because I think it is important. Because I think it is a scene that could greatly benefit me and other folks with disabilities. Because I think it is an especially good idea to switch particularly if you are of ill health or malfunctioning immune systems. Please understand that these points are also my own opinion and I am not a medical professional.
So here are some random eCig/Vaping words/phrases/ideas with their meanings. I plan to do some more later. This is in no particular order. Feel free to offer corrections, additions, and comments below!
eJuice - this is the center of the Vaping world: the liquid used to create the vapor inhaled by Vapers.
Frost/Ice/Cold - every eJuice labeled as being cold or cold in some way usually means that it contains mint (rare) or menthol (common) flavoring. This is just as important if you are looking to avoid it as if you want it!
Spinner - a spinner is a battery with voltage control input manipulated by a marked disk on the bottom of the battery. The marks are usually on the body, and you change the power by turning the ribbed (usual) disk to the desired mark on the body. While the marking methods can differ, this always means that voltage control is changed by that "spinning" disk.
Analog - a typical cigarette product.
Vape - to vape is to inhale the atomized vapor created by eCigs and modes. It is to eCigs as smoking is to analogs.
Vaper - an eCig user. Also: a label worn with pride and with a resistance to the status quo of nicotine delivery.
Vapor - the atomized mist created by eCigs and Mods.
Mod - a vaping device is more than a decorated battery. Sometimes the actual battery is a separate product, contained within the mod. Mods are products that have more finite control over your experience, may have digital displays, and can come in very utilitarian or highly stylized models. Mods can also refer to vaping set ups altered by DIY vapers.
Thursday, November 14, 2013
ProPatient: Shots in my Spine!
Recently I had steroids injected into my lower spine in order to combat pain and limited movement in my lumbar region. I have bulging disks, and one has gone so far as to tear and leak somewhat. This has been a problem for a few years, but recent MRI results showed that I know had arthritic and spinal stenosis changes in these lumbar beauties.
First, a picture of the beautiful fall colors in our yard to reward you for going on these jaunts with me:
Those changes in my spine triggered a different reaction this time, and the lab coats decided it was time to do something else. We had tried habit changes, exercises, physical therapy, and I was having some temporary luck with a TENS Unit. A new, longer lasting but still probably temporary effort was determined to be appropriate: epidural steroid injections.
It has been a little while, and so far, so good. I now have a spot on my back that does not experience chronic pain, and it is amazing. I am really happy with it so far and hope that the change hangs around for a while. Since I have a lot going on, I can not give a clean opinion on it like someone that only had this issue and then this procedure could produce.
Prepping for the procedure considered "outpatient surgery" by my medical system, was almost non-existent. If they offer sedation and you want it, you have to follow that non-eating/drinking thing. I have seen so many variations of that damned rule, and so many hospital staff breaking it that I have little respect for that blasted thing. I did take their twilight this time, but I want to learn more about how this is done and will probably avoid it the next time so I can share that with you.
The only things you need to bring are your patient bag, boredom toys, crafts, reading, and a driver. Plan on taking it easy for a day or few, depending on how this sort of thing usually alters your general well being and stay away from lifting heavy stuff or having to sit in the same position for a few days.
The folks that worked on me did not even need jewelry removal, except if I had body piercings in the area that was slated for imaging. Everything was professional and quick.
I had the procedure on a Friday, they called Monday to check up on me, and I see them in a month to review how it went and whatever we need to do next. I am very happy with it so far, and only if this is very short lived will I consider it not worth the effort. Right now I am irritated we did not do this sooner, and bugged that it is not a permanent solution - both only problems because I am happy with the result.
First, a picture of the beautiful fall colors in our yard to reward you for going on these jaunts with me:
 |
| I planned on more pictures, then the cold snap happened. |
Those changes in my spine triggered a different reaction this time, and the lab coats decided it was time to do something else. We had tried habit changes, exercises, physical therapy, and I was having some temporary luck with a TENS Unit. A new, longer lasting but still probably temporary effort was determined to be appropriate: epidural steroid injections.
It has been a little while, and so far, so good. I now have a spot on my back that does not experience chronic pain, and it is amazing. I am really happy with it so far and hope that the change hangs around for a while. Since I have a lot going on, I can not give a clean opinion on it like someone that only had this issue and then this procedure could produce.
Prepping for the procedure considered "outpatient surgery" by my medical system, was almost non-existent. If they offer sedation and you want it, you have to follow that non-eating/drinking thing. I have seen so many variations of that damned rule, and so many hospital staff breaking it that I have little respect for that blasted thing. I did take their twilight this time, but I want to learn more about how this is done and will probably avoid it the next time so I can share that with you.
The only things you need to bring are your patient bag, boredom toys, crafts, reading, and a driver. Plan on taking it easy for a day or few, depending on how this sort of thing usually alters your general well being and stay away from lifting heavy stuff or having to sit in the same position for a few days.
The folks that worked on me did not even need jewelry removal, except if I had body piercings in the area that was slated for imaging. Everything was professional and quick.
I had the procedure on a Friday, they called Monday to check up on me, and I see them in a month to review how it went and whatever we need to do next. I am very happy with it so far, and only if this is very short lived will I consider it not worth the effort. Right now I am irritated we did not do this sooner, and bugged that it is not a permanent solution - both only problems because I am happy with the result.
Wednesday, November 13, 2013
Thoughts on a Poly Paper
A G+ friend posted this article, and asked my opinion on it. I found my little soapbox and the energy to climb on it for a little while, and I thought I would share the results with you. Life has been hectic here, the reinstatement of coverage means I am running back and forth, making, breaking (stupid flares!) and arranging appointments.
The following has only been edited to remove social niceties and make more sense as a blog post. The meaning, if you can find any, has remained intact!
__________
Hi! Sorry it took awhile to get to this, but I wanted to give it some solid attention. Thanks for asking me what I think, here! I am going to make some notes as I go, so I do not forget anything.
Interesting that the author assumes that while thoughts regarding sexuality get attention in poly relationships, that issues regarding class, education, race, gender, religion and other issues do not. I would argue that all those issues get the same, if not more attention as they do in a monogamous relationship. But a lot of the ins and outs of relationships in general are like that, included in the basics of all intimate partnerings but not often touched upon in poly specific materials.
I started to feel odd and left out by the author, fitting only a few of the list of presumed identities being thrust upon me by assumption, you know? The thing about poly families is that they continue to identify with the communities they already know and embrace, whether that be the LGBT/QUILTBAG communities or a group held together by racial ties or religious affiliation... You do not stop being what and who you are just because you discover that your ability to romantically love is qualitative rather than quantitative.
Something I thought the author ignored is that most literature available on the mass market on sexual differences starts by coming from largely middle class white men and rarely women. The first literature I saw about folks that are trans was about folks that were white, gay and white, pervy and white, intersexual and white... Since that is still the narrative that is most accepted by the people that hold the keys to the mass market, that is what we largely get. The Internet was the same at first, but now anyone that can access the 'net can write about their experiences. And maybe even get taken seriously.
After reading more, I think that perhaps I was initially too harsh on the author of this work. They are criticizing the existing material for obvious failings when it comes to addressing issues important to everyone outside of the “standard human” or even “standard USian” type: racial justice, actually economic opportunity equality, gender issues… Now, on the other hand, had these white (really, we are still using “European stock?” 1895 called and wants that term back!), middle class, mostly male, mostly college educated, mostly Christian, mostly Western folks tried to include issues of which they had no real familiarity - we would have pilloried them for speaking for other folks.
Rather, we need to make room for those voices, I think, to speak to their own truth. What they could have done was include voices with experiences vastly different from their own, and they are responsible for not doing just that.
I think the truth is that we come to polyamory on our own, out in whatever world we live in, and some are able to act on that because we have more societal freedom, and some are free to act on that because they are already so despised, so disregarded that one more “sin” does not matter. Maybe there are a lot more of us out there, unable to do so much as a Google search free of fear of being discovered, rapidly unemployed and ostracized or even physically hurt or killed. It is true that “family focused” jerks like Rick Santorum have started using poly families as their new big scary thought for the USian public, and folks are not ready to take that kind of bigotry seriously because we are all seen as a kind of outlier, by desire or by sentence.
I think that the author was brave, taking a little understood and derided part of her life and using it for a professional paper. Kudos to her! And it is a good read, with solid information. By being a woman writing about polyamory, she is contributing a work that is not as “mainstream” as some of the authors she sites. One thing I have noticed about various movements is that they purchase mainstream acceptance by being represented by mainstream bodies. These white, middle-classed, college educated men putting out poly works will help gain mainstream acceptance. I would like us to be a solid community accepting of all comers first, but it rarely seems to happen that way.
(Thanks for giving me a heads up! I liked the piece, and feel honored that you asked for my take. I hope you do not regret it now! - my personal note to the person asking for my opinion. I explained that I might use my side of the conversation as a blog post and the idea was met happily.)
I think the truth is that we come to polyamory on our own, out in whatever world we live in, and some are able to act on that because we have more societal freedom, and some are free to act on that because they are already so despised, so disregarded that one more “sin” does not matter. Maybe there are a lot more of us out there, unable to do so much as a Google search free of fear of being discovered, rapidly unemployed and ostracized or even physically hurt or killed. It is true that “family focused” jerks like Rick Santorum have started using poly families as their new big scary thought for the USian public, and folks are not ready to take that kind of bigotry seriously because we are all seen as a kind of outlier, by desire or by sentence.
I think that the author was brave, taking a little understood and derided part of her life and using it for a professional paper. Kudos to her! And it is a good read, with solid information. By being a woman writing about polyamory, she is contributing a work that is not as “mainstream” as some of the authors she sites. One thing I have noticed about various movements is that they purchase mainstream acceptance by being represented by mainstream bodies. These white, middle-classed, college educated men putting out poly works will help gain mainstream acceptance. I would like us to be a solid community accepting of all comers first, but it rarely seems to happen that way.
(Thanks for giving me a heads up! I liked the piece, and feel honored that you asked for my take. I hope you do not regret it now! - my personal note to the person asking for my opinion. I explained that I might use my side of the conversation as a blog post and the idea was met happily.)
__________
I hope that you, dear Reader, do not regret how you spent your time just now. If you have thoughts about my thoughts about this paper, please feel free to discuss them below. I do respond to comments and I like getting them (for the most part, the Blogger filters help a lot with unwanted spam!).
Thursday, November 7, 2013
One True Cause
I find little credibility in the One True Cause argument. Someone else has probably come up with a better name for it, but a quick tour through Derailing for Dummies has left me unsatisfied. Make no mistake, I find D4D otherwise very useful and like it quite a lot! Give me a minute, and I think you will find that "One True Cause" is used frequently as a derailing and discrediting tactic.
To clear this up, I do not mean "cause" as in cause and effect, although that is also a logical fallacy. I am using "cause" in One True Cause or 1TC or OTC to mean a situation, bigotry, societal failure, civil rights issue... the sort of causes we gather around to solve, resolve, improve, remove, make better. The intent is to make your cause less worthy of time, attention, and effort than their cause.
The One True Cause is this: why are you talking about/working on/devoting time and energy to X cause when Y cause is more important, more universal, more pressing and/or more personal? The OTC shares mental real estate with the Oppression Olympics, although the person committing the logical fallacy need not believe or be touched by either cause, they just want to be done with yours.
A recent example I have seen is this paraphrase of mine: how can you talk about Glenn Greenwalt's pal getting detained and the chilling effect it may have on free speech when Greenwalt is a lying jerk and other people have been treated worse? Here, I respectfully posit that one can care about the assault on free speech via detention of loved ones no matter how much one may dislike the people in this particular story and even still care about the dishonesty and ethical questions raised by the same persons. I can think that GG looks like a lying jerk and still beat the drum of free speech.
A common OTC argument is often brought up regarding US drone bombing. We mustn't concern ourselves with the innocents murdered in the never ending search for "top Al Qaeda" operatives because that would diminish our ability to kill the "right" people in Pakistan, Yemen, Afghanistan... over there. Except that innocents murdered in a bloody attempt to exact justice is how this all started, whether you think it started with 9/11 or the use of Afghani people as chess pieces to fight a Cold War with the USSR, or, or, or...
Admittedly, it may be hard to drag our focus from getting through our own days, fighting the oppressions heaped upon us, scraping to put what we can on the table at dinner time for our loved ones to give a damn about people exploded out of existence while doing the same damn thing over there... someplace far away, some place filled with brown people struggling the same struggles and (just like us) never earned the need to fear random death from above.
As a disabled person raising a ruckus, I see the One True Cause fallacy all the time. How can I complain about the lack of accessibility at the local Pride Fest when that just give critics more fuel to try to shut it down? Well, I can tell you that as bisexual woman with disabilities I could not cross streets because beer booths had deliberately blocked curb cuts. How can I, a poor white lady, spend time on race issues when I should be focused on poverty? Well, my daughters go to the same schools that are neglected because there are not enough white faces in those schools for the people in power to care about them. Even if they went to lily white schools, better education for "inner city" or "deprived" schools means more skilled workers and smarter citizens which increases economic opportunity for everyone.
Often One True Cause is used with some legitimate feeling, worry that this other cause will suffer if people are not singularly devoted to it. People and their issues can be complex, and OTC often ignores the intersections that exist in social justice, in caring about freedom and real opportunities for all peoples. But just as we can love our parents, our significant others/spouses, our children, and our friends and extended family - I believe that we can care about more than one cause with legitimate depth of feeling and commitment. Some of us must do so, whether we ever wanted to or not. Just inside our walls here at home we are directly concerned with disability, neuro-atypicality of various types, feminism, poverty, school quality/funding, the Affordable Care Act/healthcare accessibility in general, religious freedom, racism (our neighbors and our children's peers are more melanin gifted than our family), QUILTBAG rights and issues...
OTC is just one more minor oppression. OTC is other people telling you what causes they think you should support. OTC is just one more way to exert control, but worse since is is usually done by social justice folks to other social justice folks. So it is likely to be listened to, likely to bypass the filters we put in place when we are dealing with folks that could not care less about making the US a more just place. This often comes from people we respect, trust - folks we value in some way.
So you see, we had to learn to juggle many interests and that is just a brief overview. OTC has no place in our social justice cosmology. OTC is different than picking the battles that mean something to you: I get that. One True Cause desires to denigrate other causes (others' causes?), and that is not cricket. On a good body day, I can actually chew gum, pat my head and rub my tummy all at the same time. But do not hold your breath waiting for a good day, I have less than a handful of those a month right now. The ones I get - I know how to spend them!
To clear this up, I do not mean "cause" as in cause and effect, although that is also a logical fallacy. I am using "cause" in One True Cause or 1TC or OTC to mean a situation, bigotry, societal failure, civil rights issue... the sort of causes we gather around to solve, resolve, improve, remove, make better. The intent is to make your cause less worthy of time, attention, and effort than their cause.
The One True Cause is this: why are you talking about/working on/devoting time and energy to X cause when Y cause is more important, more universal, more pressing and/or more personal? The OTC shares mental real estate with the Oppression Olympics, although the person committing the logical fallacy need not believe or be touched by either cause, they just want to be done with yours.
A recent example I have seen is this paraphrase of mine: how can you talk about Glenn Greenwalt's pal getting detained and the chilling effect it may have on free speech when Greenwalt is a lying jerk and other people have been treated worse? Here, I respectfully posit that one can care about the assault on free speech via detention of loved ones no matter how much one may dislike the people in this particular story and even still care about the dishonesty and ethical questions raised by the same persons. I can think that GG looks like a lying jerk and still beat the drum of free speech.
A common OTC argument is often brought up regarding US drone bombing. We mustn't concern ourselves with the innocents murdered in the never ending search for "top Al Qaeda" operatives because that would diminish our ability to kill the "right" people in Pakistan, Yemen, Afghanistan... over there. Except that innocents murdered in a bloody attempt to exact justice is how this all started, whether you think it started with 9/11 or the use of Afghani people as chess pieces to fight a Cold War with the USSR, or, or, or...
Admittedly, it may be hard to drag our focus from getting through our own days, fighting the oppressions heaped upon us, scraping to put what we can on the table at dinner time for our loved ones to give a damn about people exploded out of existence while doing the same damn thing over there... someplace far away, some place filled with brown people struggling the same struggles and (just like us) never earned the need to fear random death from above.
As a disabled person raising a ruckus, I see the One True Cause fallacy all the time. How can I complain about the lack of accessibility at the local Pride Fest when that just give critics more fuel to try to shut it down? Well, I can tell you that as bisexual woman with disabilities I could not cross streets because beer booths had deliberately blocked curb cuts. How can I, a poor white lady, spend time on race issues when I should be focused on poverty? Well, my daughters go to the same schools that are neglected because there are not enough white faces in those schools for the people in power to care about them. Even if they went to lily white schools, better education for "inner city" or "deprived" schools means more skilled workers and smarter citizens which increases economic opportunity for everyone.
Often One True Cause is used with some legitimate feeling, worry that this other cause will suffer if people are not singularly devoted to it. People and their issues can be complex, and OTC often ignores the intersections that exist in social justice, in caring about freedom and real opportunities for all peoples. But just as we can love our parents, our significant others/spouses, our children, and our friends and extended family - I believe that we can care about more than one cause with legitimate depth of feeling and commitment. Some of us must do so, whether we ever wanted to or not. Just inside our walls here at home we are directly concerned with disability, neuro-atypicality of various types, feminism, poverty, school quality/funding, the Affordable Care Act/healthcare accessibility in general, religious freedom, racism (our neighbors and our children's peers are more melanin gifted than our family), QUILTBAG rights and issues...
OTC is just one more minor oppression. OTC is other people telling you what causes they think you should support. OTC is just one more way to exert control, but worse since is is usually done by social justice folks to other social justice folks. So it is likely to be listened to, likely to bypass the filters we put in place when we are dealing with folks that could not care less about making the US a more just place. This often comes from people we respect, trust - folks we value in some way.
So you see, we had to learn to juggle many interests and that is just a brief overview. OTC has no place in our social justice cosmology. OTC is different than picking the battles that mean something to you: I get that. One True Cause desires to denigrate other causes (others' causes?), and that is not cricket. On a good body day, I can actually chew gum, pat my head and rub my tummy all at the same time. But do not hold your breath waiting for a good day, I have less than a handful of those a month right now. The ones I get - I know how to spend them!
Wednesday, November 6, 2013
PatientC Manifest
Welcome to me: the me before I even get up, the base physical me, the challenges in my day, and what I conquer, compromise, and coddle to get to you, Dear Reader.
There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.
The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)
These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.
Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.
In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.
About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).
All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.
Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.
I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.
I think I am almost done.
I have been hypoglycemic for two decades, controlled through diet.
I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself.
I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old.
I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.
I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable.
I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.
I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still.
Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.
And the migraines. Wow, the migraines sometimes...
Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.
(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)
There is the whole lupus/SLE thing. Because of two disagreeing rheumatologists, I am not currently on Plaquenil, which did help somewhat. This mess brought to you by a gutless GP (now out of the country, I think) that refused to override one of the two rheumys. This has been a cluster fuck since it started and I am just not surprised by crap like this anymore. We are treating some of the pain brought on by lupus, and I go take steroids during flares. Note: this should get taken more seriously now that my brother has been affirmatively diagnosed with lupus/SLE as well.
The fibromyalgia thing came along later, and I take an anti-seizure med to calm down the fibro spots and the electric pain that runs up and down my back (I envision my spine & back as being a big Tesla coil type thing when this pain is uncontrolled.)
These two alone can cause brain fog/cognitive dysfunction, fatigue, loss of memory, boatloads of pain, et al. They, and some of the following, are exclusionary diagnosis, which is a hell no on should ever suffer.
Even later came the irritable bowel syndrome/IBS thing. This is even more of a social life killer than the other two. While all three can have flares (and sometimes set each other off, what fun!), IBS flares usually keep me within ten feet of an accessible bathroom. So it is also horribly life changing but one of the more difficult things to talk about. USians are so weird about bathroom habits, we do not even have the language to discuss this well. I take an anti-spasmodic for this, to keep my guts from churning too fast.
In between the last two we found carpal tunnel syndrome. I had open carpal tunnel surgery last year, and while recovery was difficult (the family made it much easier than it could have been for me), the recovery from it was complete. Since then it has gotten worse in my left hand, and we found ulnar entrapment in both my hands. As this stuff progresses, I will need to get opened up again.
About five years ago we found bulging/herniated disks in my back. These have now gotten worse and I just found out that there is now spinal stenosis and arthritis happening in my spine. I have started using a TENS unit to manage that pain. It works, but since it does not do anything for the problem causing the pain, it comes back after use: a day or two if I am taking it easy, later that day if I am trying to get stuff done. Next week I will have steroids injected into my spine to try to manage this more effectively and help with the hyper-mobility and hypo-mobility that seem to be associated with the diagnosed problems (hopefully they are not new ones!).
All of that mess means that I take both pain meds and a muscle relaxer. They help, they do. No day is pain free - no day will likely ever be pain free. That is not even the goal anymore. This past year I have put on some weight. Moving hurt, I started moving less. When I moved less, I burned less calories. This situation has actually caused better pain management, so... umm... silver lining? Not really, but I am glad to do something about it.
Some genius decided I was depressed. While depression is often a valid diagnosis, I still argue that I am angry, grieving, in constant physical pain, downright sad... I still view depression as unreasonable sadness, morose without source. I am taking an mild anti-depressant anyhow, because if you do not, then they see you as "non compliant" and that greatly changes how every doctor sees you and treats you. Until they have little time capsules you can swallow and go back and make good diagnosis early, this will probably remain a problem of various intensity.
I am also avoidant, which combined with the lupus/fibro/IBS means that stupid social bullshit literally makes me sick. Stress can throw me into Flaresville if managed badly or unmanageable. I resent the hell out of that, but my resentment does not, can not make it any less true. I internally debate if it is ableist to get shitty with me for protecting my own mental health in cases of social stupidity. Take that definition with a grain of salt, though - it is not as rare as you might think to be a avoidant public personality. **cough** I could explain that, but I feel like I already screwed up telling some folks that I am avoidant in the first place. I have a med to take when I am getting too stressed, although it has a sedating quality, so I try to avoid it.
I think I am almost done.
I have been hypoglycemic for two decades, controlled through diet.
I have a handful of allergies that make medical life difficult. One of them causes anaphylactic shock and can cause death all by itself.
I take vitamins, but have to take Vitamin D3 for a deficiency and I take a separate calcium supplement to help guard against the years of steroids I will have taken should I be lucky enough to grow old.
I have an unexplained spot on cranial MRIs that we stopped monitoring after four or so years of watching it.
I had a full (minus one ovary) hysterectomy due to ovarian cysts and unmanageable chronic primary dysmenorrhea (super awful menstrual syndrome). We did not know I likely had an illness that, when treated, could have made this more manageable.
I had my tonsils removed as an adult, because we did not understand why I was getting step/not strep six times a year. We did not know I likely had an illness that, when treated, could have made this more manageable. Again.
I used to have a handful of kidney/UTI trouble. I almost lost a kidney in grade
school because I did not run the fever they expected and so no one treated me. My low body temp/fevers plagues me even still.
Oh, and there is the TMJ thing, which I only notice when it is really bad. Couple that with really soft teeth, a really dry, small mouth, and you have a recipie for disaster. Anyone that tells you that dental insurance is not as necessary as health coverage is lying through their... whatever. On the up side, my dentist is all kinds of awesome. He makes sure that everyone in the office clinic treats all of us patients like we have cadillac plans. They are amazing. Which is good, because whenever I can use a dentist, I go to the dentist. Senator Bernie Sanders is the only person with visibility talking about the dental catastrophe that is happening in the US and working to help it.
And the migraines. Wow, the migraines sometimes...
Welcome to my body. This is all before I get out of bed every day. Make no mistake: this is not a litany of woes. Well, maybe it is, but you do not see a single "poor me" or anything like that. This post is not a complaint, it is just what I deal with every damn day.
(Wow, that was longer than I thought it would be. One day, maybe, I will go ahead and tell you how I got here, to you, Dear Reader.)
Tuesday, October 29, 2013
QuickHit: Beyond Lupus
I have no long, rambling entry today, but I do have something to share:
The Embody program: Beyond Lupus.
The Boyfriend heard mention of it on a television commercial (I think). You may also hear it referred to as Rethink Lupus. The website contains an initial screening for a clinical trial of a drug called Epratuzumab. Do not dare ask me how to pronounce it, I have no idea!
There is a ten minute or so screening questionnaire on the web site. I like this because we can determine if I should bother going to a participating facility. Lupus/SLE can make that difficult, especially during flares. They also tell you the closest joint you can use to participate. You do want to have things like a med list, date of onset, other illnesses and that sort of thing when you sit down to fill it out.
The trial is a year, and there is the potential for later entries. There may also be a two year extension where everyone gets the drug after the trial, which will be super great if it does what it is supposed to do (bind to a protein on mature, malignant B cells in the immune system and get them to quit making a mess of your life, as I understand it).
It is important, in general, for people to take part in clinical trials so that we can get good drugs into the market and to people that need it. That is not just glurge designed to get you to sign up, it is also true. You do need to be fully informed of risks and benefits, and I intend to be so informed before I sign on for this.
I do not know how the trial will go, if I will actually participate, if I can say anything about it to you here if I do, or anything much yet. But as a chance to get better, or at least help get a drug out there that can help somebody, I feel like I have to try. And it is exciting to be faced with the idea of changing this up and trying something that may make that real difference you and I need.
The Embody program: Beyond Lupus.
The Boyfriend heard mention of it on a television commercial (I think). You may also hear it referred to as Rethink Lupus. The website contains an initial screening for a clinical trial of a drug called Epratuzumab. Do not dare ask me how to pronounce it, I have no idea!
There is a ten minute or so screening questionnaire on the web site. I like this because we can determine if I should bother going to a participating facility. Lupus/SLE can make that difficult, especially during flares. They also tell you the closest joint you can use to participate. You do want to have things like a med list, date of onset, other illnesses and that sort of thing when you sit down to fill it out.
The trial is a year, and there is the potential for later entries. There may also be a two year extension where everyone gets the drug after the trial, which will be super great if it does what it is supposed to do (bind to a protein on mature, malignant B cells in the immune system and get them to quit making a mess of your life, as I understand it).
It is important, in general, for people to take part in clinical trials so that we can get good drugs into the market and to people that need it. That is not just glurge designed to get you to sign up, it is also true. You do need to be fully informed of risks and benefits, and I intend to be so informed before I sign on for this.
I do not know how the trial will go, if I will actually participate, if I can say anything about it to you here if I do, or anything much yet. But as a chance to get better, or at least help get a drug out there that can help somebody, I feel like I have to try. And it is exciting to be faced with the idea of changing this up and trying something that may make that real difference you and I need.
Thursday, October 24, 2013
Self Liking Media
Or: Like Me! Like Me! Like Me! I have opinions. Let me show you this on on Self Liking Media. Enjoy, Gentle Reader.
I take in a lot of content on the internet. I watch YouTube videos. I have a lot of podcasts I listen to on iTunes. I use (or have used) Spotify, TuneIn, Pandora, Netflix, Vimo, Hulu, Last.fm, Bandcamp, Mixcrate, Stitcher, Blog Talk Radio, and Ustream just to name a handful. I use web site media players, game site videos, social justice media wherever I can find it.
What I am saying is that I have a lot of time where it is difficult to do anything, so I consume the content of others. I have even made a tiny little bit, so I have an idea how hard it is. As I have talked about here before: I have no problem letting folks know I dig their stuff with a plus or a like or five stars or email or whatever. I think it is (the definition of) the least we can do for those folks trying to inform, entertain, and/or educate us.
The best creators never tell you how to feel about their creations. You should be allowed to experience it on your own and form an un-beleaguered opinion. Like something or not, you should have the ability to form that opinion based on the media itself. You should not be inundated through the piece to form an opinion you do not have yet, or badgered to change a non-glowing opinion at the end.
Mea culpa: I have been guilty of the "like me!" mess, but I will not anymore. You get to decide what you like.
But if you put your stuff out there on a system that has an opinion system, then you have voluntarily agreed to letting people voice their own opinion on that system. I respectfully address that you get over it, or get off of those systems. YouTubers and Facebookers and iTuners and whatever: quit telling me to give you a good rating and spend that energy into your project and make it even better.
Now, contrary to what you might think, I am not dogging everyone that made something on the Internet ever and then asked you to dig it. There is a one word cure to this: if. Well, you know, and variations of it:
Down with the phenomena of Self Liking Media! Remember, you can show me some love below if you like what I do:
I take in a lot of content on the internet. I watch YouTube videos. I have a lot of podcasts I listen to on iTunes. I use (or have used) Spotify, TuneIn, Pandora, Netflix, Vimo, Hulu, Last.fm, Bandcamp, Mixcrate, Stitcher, Blog Talk Radio, and Ustream just to name a handful. I use web site media players, game site videos, social justice media wherever I can find it.
What I am saying is that I have a lot of time where it is difficult to do anything, so I consume the content of others. I have even made a tiny little bit, so I have an idea how hard it is. As I have talked about here before: I have no problem letting folks know I dig their stuff with a plus or a like or five stars or email or whatever. I think it is (the definition of) the least we can do for those folks trying to inform, entertain, and/or educate us.
The best creators never tell you how to feel about their creations. You should be allowed to experience it on your own and form an un-beleaguered opinion. Like something or not, you should have the ability to form that opinion based on the media itself. You should not be inundated through the piece to form an opinion you do not have yet, or badgered to change a non-glowing opinion at the end.
Mea culpa: I have been guilty of the "like me!" mess, but I will not anymore. You get to decide what you like.
Now, contrary to what you might think, I am not dogging everyone that made something on the Internet ever and then asked you to dig it. There is a one word cure to this: if. Well, you know, and variations of it:
- If you liked this video, please remember to hit the like button.
- Hit the subscribe button if you like it so much you want more.
- Did you dig this G+ post? Let me know with that +1 button, okay?
- We work a lot on this podcast. Want us to keep it up? Five stars will let us know! If you hear an issue, please give us a heads up!
- We are able to get help with equipment and stuff based on our like counts. So please help us out with a good review - you listened to the whole thing, so you like us, right?
- Enjoy our skits? Let us know! There is a donate button, too!
- Please use our comment section to give us accolades, guidance opinion, whatever comes to your head for us. Well, almost whatever - behave! Check out our posting rules for questions.
For all that is good in this world, quit telling us to like your stuff and make it likable instead, okay? Okay. Thanks. Look, the creators I am addressing are giving out mostly free content: we are predisposed to like you. "Yea, free stuff!" said the Internet. Then we spend time on you, further prepping us to like you. People do not like to be wrong, so we are going to want to like you the longer we spend time on your content.
I know, there are trolls, but they are actually a tiny fraction of people on the Internet. They are just the loudest because it is easier to shit on something than to hold it up. Sadistic lulz are no longer witty retorts, now they are usually just the flatulence of the bored.
On perks: if you give a perk to the best opinions, good for you. But I think it does a disservice to you and your fans. How can you know what they really think if you have some raffle prize for shining reviews. A lot of the folks that hound consumers about it never give a breath to telling them what you actually think, they just want the like/plus/stars. So if your content has a problem like a faulty/misplaced light or bad levels or misinformation, who is going to tell you? It should be your fans, but you have them giving prize-eligible reviews instead. I think that can cause content creators more harm than good. You know your content's needs better than I, so take that as you will.
Down with the phenomena of Self Liking Media! Remember, you can show me some love below if you like what I do:
Wednesday, October 23, 2013
BadCripple: The ACA and You
Dear Folks,
First: take a deep breath. We have some things to talk about. You may have to Google some stuff, you may have to visit some sites more than once. But you are going to be okay.
Since I am chronically ill and both sick and flaring, you will have to find most links on your own. Let me break down this part of my life for you: my phone thinks the damn hospital is my place of employment, okay? There is no setting to say I am just disabled. Heh.
Thanks to the ACA, you are going to be far more okay than you have ever been, if you were not independently wealthy. If you are independently wealthy: shut your damn dirty mouth about the ACA. Your fucking crocodile tears are part of the problem. Go polish your Bentley, the grown-ups have the floor.
I am looking at you, Marco Rubio - quit fucking up your people in favor of some more money, you jackass. You were never going to be President anyway. Go write some useless memoir. I will read it when it gets to used book store bargain bundles.
Well, most of you are going to be okay. If you are poor but working in a state that did not accept the federal money to expand Medicaid you may still be fucked for a while. As I understand it, though, the Administration is going to try to find other ways to get you covered (you know, when they quit putting out the flaming Tea Party doggie bags on the White House lawn). That is the fault of your state, though, you got it? Good, because you have enough flaming shitballs to juggle just to get through the day. All I ask is that you vote, and remember this when you vote.
Okay, the rest of you: did you take a breath? Good, good. Take another one. For the first time ever, you are going to have reliable access to affordable healthcare. Yeah, really! You will have it no matter what happens to your job, even if you move, even if you or a family member comes down with a multi-million-dollar illness. No shit! Even if you get poor, unless you were in a red state that turned away the money to help you then. Think about that when you vote.
I know, I know, the web site is hard to use right now. But it is not just about the web site, and the web site is going to get fixed. You have until, like, January to get situated. That information is everywhere. You are going to be okay.
About the goddamn web page: this is not a simple thing. This is not some script kiddie's About.me page. This is a complicated thing, connecting to state and federal government, the IRS, dozens of health care insurers... You know how hard it is just to get some suits to decide where to go for lunch, let alone coordinate that kind of cooperation. Although other countries have universal coverage: this has never been done before.
So make up your own mind, but educate yourself first, please. We have enough business people, "elected" leaders, and party dunces hollering straight out of their asses. You take care of yourself, and if you still cannot get things going for you and your family, take a deep, deep breath. You have a while.
First: take a deep breath. We have some things to talk about. You may have to Google some stuff, you may have to visit some sites more than once. But you are going to be okay.
Since I am chronically ill and both sick and flaring, you will have to find most links on your own. Let me break down this part of my life for you: my phone thinks the damn hospital is my place of employment, okay? There is no setting to say I am just disabled. Heh.
Thanks to the ACA, you are going to be far more okay than you have ever been, if you were not independently wealthy. If you are independently wealthy: shut your damn dirty mouth about the ACA. Your fucking crocodile tears are part of the problem. Go polish your Bentley, the grown-ups have the floor.
I am looking at you, Marco Rubio - quit fucking up your people in favor of some more money, you jackass. You were never going to be President anyway. Go write some useless memoir. I will read it when it gets to used book store bargain bundles.
Well, most of you are going to be okay. If you are poor but working in a state that did not accept the federal money to expand Medicaid you may still be fucked for a while. As I understand it, though, the Administration is going to try to find other ways to get you covered (you know, when they quit putting out the flaming Tea Party doggie bags on the White House lawn). That is the fault of your state, though, you got it? Good, because you have enough flaming shitballs to juggle just to get through the day. All I ask is that you vote, and remember this when you vote.
Okay, the rest of you: did you take a breath? Good, good. Take another one. For the first time ever, you are going to have reliable access to affordable healthcare. Yeah, really! You will have it no matter what happens to your job, even if you move, even if you or a family member comes down with a multi-million-dollar illness. No shit! Even if you get poor, unless you were in a red state that turned away the money to help you then. Think about that when you vote.
I know, I know, the web site is hard to use right now. But it is not just about the web site, and the web site is going to get fixed. You have until, like, January to get situated. That information is everywhere. You are going to be okay.
About the goddamn web page: this is not a simple thing. This is not some script kiddie's About.me page. This is a complicated thing, connecting to state and federal government, the IRS, dozens of health care insurers... You know how hard it is just to get some suits to decide where to go for lunch, let alone coordinate that kind of cooperation. Although other countries have universal coverage: this has never been done before.
So make up your own mind, but educate yourself first, please. We have enough business people, "elected" leaders, and party dunces hollering straight out of their asses. You take care of yourself, and if you still cannot get things going for you and your family, take a deep, deep breath. You have a while.
Friday, October 18, 2013
My Life, Bottled
Do you keep flowers from special occasions? I do: funerals, weddings, Mother's Day, birthdays - if someone gives me flowers, I keep them! I know flowers are kind of frivolous gifts, but I really like having fresh life and color at my desk or table.
I counter the fleeting nature of cut flowers by drying them and keeping the flower petals. I kept them in pretty gauze bags. I have used some for sachets for the Minions.
I started running out of places to keep these dry flower petals.
I collect little glass bottles. The kinds you see in craft stores, or in front of windows at restaurants. I think the are pretty. I have some that are colored cut class, some that are clear. I have skinny and fat ones, tall and short, simple and shaped.
Eventually I started keeping the petals in my glass jars. recently I realized I was kind of canning or jarring my life. The bottles hold flowers from my grandmother's funeral last month, from get well flowers from hospital stays, from some sultry Valentine's days...
I thought that it was neat, and wanted to share it with you. I have more meaty posts in the works, but once in a while I like to post something light and fun.
I think I will give them to my Minions, Menfolk, and my friends when I die. Maybe mix them with my ashes if I get cremated. Maybe scent them my favorite perfumes or leave it to my family to scent bags/bottles of me with their favorite scent of mine... Oh, I could go to Demeter and get library book or leather or whatever folks associate with me...
My life, in bottles:
I counter the fleeting nature of cut flowers by drying them and keeping the flower petals. I kept them in pretty gauze bags. I have used some for sachets for the Minions.
I started running out of places to keep these dry flower petals.
I collect little glass bottles. The kinds you see in craft stores, or in front of windows at restaurants. I think the are pretty. I have some that are colored cut class, some that are clear. I have skinny and fat ones, tall and short, simple and shaped.
Eventually I started keeping the petals in my glass jars. recently I realized I was kind of canning or jarring my life. The bottles hold flowers from my grandmother's funeral last month, from get well flowers from hospital stays, from some sultry Valentine's days...
I thought that it was neat, and wanted to share it with you. I have more meaty posts in the works, but once in a while I like to post something light and fun.
I think I will give them to my Minions, Menfolk, and my friends when I die. Maybe mix them with my ashes if I get cremated. Maybe scent them my favorite perfumes or leave it to my family to scent bags/bottles of me with their favorite scent of mine... Oh, I could go to Demeter and get library book or leather or whatever folks associate with me...
My life, in bottles:
 |
| Shelf of bottles filled with flower petals, two empty ones up front shaped like a male and a female torso. |
 |
| A photo from further back, showing the book shelves filled with latest books, knick knacks, and on top - the life bottles. |
Thursday, October 10, 2013
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.
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.
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.
Saturday, September 7, 2013
GimpyGamer: Do Not Be a Dickwolf
Dammit, #dickwolves, how I hate thee. How I would rather pluck out my own eyes with safety razors while listening to a dramatic reading of the StormFront forums by Ben Stein. But here you are again, in the eye of the Internet and crossing my path quite a lot.
Should you be reading this, and know that you are, indeed, cursed with the fetid, putrid curse of cranial lupen phallitis feel free to show yourself to the X mark on your window, or better: your browser and proceed about your other business of kicking the crippled and asking the homeless why they do not just "get a job, loser!?!" before spitting into said person's coin cup. Or whatever you do to feel good about yourself, I guess, when taunting rape survivors just does not cut it for you.
As you learn about this mess, one of the first things you will notice are the dates: this shitstorm started about three years ago.
So they are gone now, yes? Yes, surely the Internet Dickwolf (as we lay people call it) can read and follow simple directions. An cursory search can show you a lot of material on the matter, and here is a timeline of the whole thing. (It is in two parts because there is so much fuckery to be found.)
Now, I had a lukewarm regard for Penny Arcade before this went down. They have made other jokes at the expense of minority populations, they even say so in some of the tripe they wrote in response to the outcry. Do not be fooled about how all of this is about a tasteless rape joke used to illustrate a flaw in the mechanics of certain MMORPGs, something that games like World of Warcraft (WoW) and Star Wars: the Old Public fix now by using phasing.
http://threefingeredfox.net/?p=50
http://gameoverthinker.blogspot.com/2013/09/dickwolfd-updated.html?spref=tw
http://www.wired.com/underwire/2013/09/penny-arcade-expo-dickwolves/
http://www.xojane.com/issues/dickwolves-penny-arcade-pax-rape-culture-mike-krahulik
https://plus.google.com/+MCFrontalot/posts/94KfgrA75JH
http://www.penny-arcade.com/2013/09/04/some-clarification
http://makemeasammich.org/2013/09/05/dear-gabe-i-dont-hate-you-but-we-need-to-talk/
http://debacle.tumblr.com/post/3041940865/the-pratfall-of-penny-arcade-a-timeline
http://debacle.tumblr.com/post/60283610877/the-pratfall-of-penny-arcade-a-timeline-part-2
Should you be reading this, and know that you are, indeed, cursed with the fetid, putrid curse of cranial lupen phallitis feel free to show yourself to the X mark on your window, or better: your browser and proceed about your other business of kicking the crippled and asking the homeless why they do not just "get a job, loser!?!" before spitting into said person's coin cup. Or whatever you do to feel good about yourself, I guess, when taunting rape survivors just does not cut it for you.
As you learn about this mess, one of the first things you will notice are the dates: this shitstorm started about three years ago.
So they are gone now, yes? Yes, surely the Internet Dickwolf (as we lay people call it) can read and follow simple directions. An cursory search can show you a lot of material on the matter, and here is a timeline of the whole thing. (It is in two parts because there is so much fuckery to be found.)
Now, I had a lukewarm regard for Penny Arcade before this went down. They have made other jokes at the expense of minority populations, they even say so in some of the tripe they wrote in response to the outcry. Do not be fooled about how all of this is about a tasteless rape joke used to illustrate a flaw in the mechanics of certain MMORPGs, something that games like World of Warcraft (WoW) and Star Wars: the Old Public fix now by using phasing.
http://threefingeredfox.net/?p=50
http://gameoverthinker.blogspot.com/2013/09/dickwolfd-updated.html?spref=tw
http://www.wired.com/underwire/2013/09/penny-arcade-expo-dickwolves/
http://www.xojane.com/issues/dickwolves-penny-arcade-pax-rape-culture-mike-krahulik
https://plus.google.com/+MCFrontalot/posts/94KfgrA75JH
http://www.penny-arcade.com/2013/09/04/some-clarification
http://makemeasammich.org/2013/09/05/dear-gabe-i-dont-hate-you-but-we-need-to-talk/
http://debacle.tumblr.com/post/3041940865/the-pratfall-of-penny-arcade-a-timeline
http://debacle.tumblr.com/post/60283610877/the-pratfall-of-penny-arcade-a-timeline-part-2
Thursday, August 29, 2013
So Much Depends on a Little Red Plus Sign
Most social networks have a method by which you can show your approval of a post. Whether it is "plussing" on G+, "liking" on Facebook, "favoriting" a post on Twitter, pushing/trusting/liking on Sulia, and pinning and/or heart'ing on Pinterest you have a way of saying "I approve of this." The problem is, there is no way of adding why you approve of a post, and I want to break down why I give things this silent mark of approval:
- I may like your post because I believe the same thing, word for word. This is the damn for me, although it seems it is the one that folks always assume is meant when you plus.
- I may favorite your tweet because I am glad you said a thing, whether I agree or not. I may just believe that your thought needs to be out there in the ether. I believe in fostering intelligent dialog when possible.
- You and I may be friends, so I plus your stuff that makes sense in order to encourage you to express yourself.
- I may appreciate the opportunity to see a product or idea. Maybe I did not even know it existed until you posted it.
- I may pin something just because it is pretty or suits my aesthetics.
- Maybe you posted something that took skill or bravery to post and I noticed.
- Sometimes I may actively disagree with a post, but appreciate the way something was said. Maybe it was an innovate way of looking at the issue, or had a personal touch that made the post evocative. Maybe it was just damn good writing. This goes back to fostering intelligent dialog when possible.
- Maybe you were just damn funny and I lol'ed.
- Every once in a while, I will fat-finger a post and plus/like/pin something I did not mean to. You know what I mean, you are looking at one thing and press the button you think will favorite your target but instead you ended up "liking" something horrible. Sometimes, it takes someone pointing it out to find out that it even happened. This is the most rare of cases, and I will immediately correct, if possible, when asked about it. Because I am a grown-up and can admit I screwed up.
- Liking/+1'ing are good ways to keep track of a post as it develops. I may just want to see what happens next...
I bet you experience this problem: someone sees that you put your stamp of approval on one thing a person wrote and now you are responsible for everything that person ever wrote, ever. There are a lot of reasons to stamp someone's post, but people will usually assume that you did it for whatever reason makes them the most angry. I ask first before I assume, and it is my opinion that other folks should ask first too. We should not let assumptive, aggressive anger overrule common sense.
On most services such as G+, Facebook, Twitter, Pinterest, Sulia you can undo your stamp of approval. Usually you can just click the same button again, the label on the button usually changes to reflect this functionality, but not in every case. If you no longer wish to have approved a post, a group, or a person - you can change your approval status to reflect that, to a degree. I rather like Buzzfeed's method of giving the user several adjectives to choose from to voice an opinion on a piece.
On most services such as G+, Facebook, Twitter, Pinterest, Sulia you can undo your stamp of approval. Usually you can just click the same button again, the label on the button usually changes to reflect this functionality, but not in every case. If you no longer wish to have approved a post, a group, or a person - you can change your approval status to reflect that, to a degree. I rather like Buzzfeed's method of giving the user several adjectives to choose from to voice an opinion on a piece.
Friday, August 23, 2013
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.
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
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. |
Tuesday, August 20, 2013
"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.
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.
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