Friday, April 24, 2020

Amazon's Deadly Covid19 Policy

Me, guarded by my loyal pittie, Nissi. 
A combative post. Here, have a nice picture of Nissi & I on our couch.

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, April 22, 2020

Rationed Health Care Will Kill Me

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

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

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

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

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

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

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

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

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

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

Thursday, April 2, 2020

Neglected Blog Gets Quarantine Post

Hallo, there. It sure has been a minute. So, yeah, obvious title is obvious. Actually, here there has been little change between pre-shelter/safety/health/Covid isolation/quarantine/just in case lock down and during it for me and mine. We shop a little further out, order everything we can and try to be mindful. 

On a happy note, congratulations to me for surviving a formal quarantine order. No fancy gown or certificate, so I admit I feel a little cheated. I had to go to my doctor's office for my quarterly Criminal Yet? pain patient visit and sometime during the day a patient that tested positive for Covid-19 was in the same building. (Not that they had any tests for us, the hoi polloi. Their rep said they had none at all but vapor locked when I asked how they could know a C19 patient was there with such a certainty as to change our lives so dramatically.) As of April 2nd I am free & clear to only be as worried miserable as everybody else!

That is right. In my county there were no tests available for a aging, disabled, immunocompromised woman even when suspected of being exposed to something as deadly as this coronavirus.

I have debated the future of this blog so many times I can hardly count them all. There are many more disability blogs out there than ever before and they are written by smarter, sharper, and more insightful people saying most of the things I think about saying here.

I do need to get some shit off of my chest, from Buddhism to the Bore in Chief and I suspect if I keep filling the ears of my Guys, they may go mad - and it just is not fair to corner them during a pandemic faux quarantine.  Windows is nagging me about yet another update, so I will see you in the next entry - or the previous ones if you so desire. Look around, get a feel of the place.

Thanks for stopping by!

Tuesday, November 27, 2018

BadCripple Makes Policy Changes

As I began writing again, Gentle Reader, I realized that I need to make some changes. So I thought that I would enumerate them to you.

Two doggos on a couch.

  • I read a lot, and then I have opinions on that reading. Or I have experiences and opinions about those experiences.  I now realize that a big hang up for me was making sure that I sourced the fuck out of my writing in order to justify those writings about those opinions. I will still source, but this is a blog and if I need to be more casual about LMGtfY to get myself in front of the blank page, then so be it.
  • I am taking more pictures and actually pursing photography in a slightly more than casual way. And you lot like pictures. So I will keep posting pics with articles as a way of pursing that interest and giving you something besides awfulness with the things I am thinking about at that moment.
  • Pass it along: I had a huge list of places I was posting my new links to and that got intimidating and otherwise bothersome. So now I will post to Facebook, Twitter, Tumblr, and Pintrest. So if you dig it, share it. This is an not a money making effort.
  • I am still the tyrant of this little space, in as much as Blogger, Google, and Alphabet allow. I endeavor to be a gracious hostess, but do not fuck around.

Monday, November 12, 2018


Well, hello there, stranger! Here we are again, me thinking I may be able to hold a thought long enough to write about it and you here to read it. Heavens help you.

Adorable black "pit bull" gazes longingly over a cushion over the back of a couch.

This election cycle I signed up to help local Democrats, and they seemed to be okay with my position of being a liberal that settles for Democrats, especially in Indiana. 

I saw Janelle Monae's Dirty Computer and it was amazing.

While many things have changed, many have not. 

I had spinal shots again, they do not last as long as we hoped. But they do help, so we will keep at it as long as that is true. I still do my PT exercises when my SI joint dysfunction acts up and that still works, but again, not as well as it used to work.

The Minions flew the coup but the Menfolk remain.  I have some things to get off my copious chest there.

I am learning to draw! For real! I can put marks on paper that resemble objects to other folks. 

My Nissi is big and healthy and willful. I am so happy with her and so proud of her. Look forward to lots of photos!

I have a computer to get used to, so many mistakes will be made. We can hit those things as they arise.

The current PotUS is the worst in my meager lifetime. There is much to say there.

I have found a lot of shortcuts to share that make it easier to live this life. I will share those: from talking about disability to friends and family to nail polish tricks.

I have some older post drafts that are, unfortunately, still relevant.

No promises, but I intend to be back for good. Now I will get to writing and hopefully produce something I can share with you on the regular.

Little chi-wow-wow mix starts to wake up in his round leopard print bed.

One of the dogs broke my face today. Not the big one, but the little one right above this paragraph. Some one was at the door so I leaned forward to get up off the couch just as he was launching himself from the end it and we collided in a manner most unpleasant. I grabbed my chin and put it back before I finished realizing that he may have actually dislocated my jaw. While there is swelling, I can talk and eat. Casual contact with healthcare providers advised that I take analgesics, ice and rest. I am doing just that, but if it is still swollen or the pain has not subsidized I will bug my doc about it tomorrow.

So start watching this space again, Dear Reader.  I am going to start writing for me but sharing it with you - which will be quite different than before where I was trying to write for you without knowing who you might be or what you might think. 

At least you  know you will see sex talk and cute dog pictures! 

Wednesday, July 5, 2017

Living with Black People

Here you can see your average white, liberal lady blogger:

Patient C in a dress her family called "retro hippie" with dog, Lucky.
Or you can see PatientC, me: white lady, disabled mom, loyal wife and girl friend, #Resist Bitch, Proud mom of Girls that with her belong to the #LGBT/#QUILTBAG community, poor Randian leech, sometimes obese but usually just a few pounds "overweight," Buddhist and ULC minister, neuroatypical rabble rouser and oversharing blogger. 

One thing (among many) that you cannot see is this: I live with black people

To my surprise, the data backed up my observation that not many people live with people that do not look like them. In the US, even outside of racist housing policies from corporate to governmental, people tend to self segregate not just along class but racial lines. There is so much material out there on redlining, racist home loans, government segregation, the Northern migration and then later, smaller repatriation. Go look, academics and commentators have formed whole careers saying things about this and you should know about this in the US if you live here, or see if it happened where you live if you live elsewhere.

What I want to focus on here is that my white family of weirdos is even more weird because we chose to live among different folks. 90% of our neighbors are African American. This makes a lot of the people in our lives black. It means that policy meant to affect black citizens probably changes our lives too - in a secondary if not a primary way. If there is a fire nearby, or a shooting, or a tree falls in our area, we stand outside and work with black people to see if help is needed or comment helplessly if that all we can do.

Within site of our house, we have one neighbor that is a white guy. He is a disabled vet with a Latina wife. Minion One sometimes house sits for them, which changed their life. They participate in the local feral cat program & never felt like they could vacation for more than a weekend and now, if they can scrape together the cash, they can go visit her relatives and not worry about home or the kitties. 

On the opposite corner to ours is a Vietnamese lady that was cool for a decade and a half but now has some beef about the breed of my dog. One of the same breed knocked her down once and once she realized I had the same breed of dog she stopped talking to me. But it is the kind of beef you get anywhere from anyone, nothing special about the fact that she comes from where she comes from and I am so white as to appear translucent. 

The neighbors just south of us are a black couple with a couple of grown children from previous marriages. In the summer of blood here, a few summers ago, they lost a grown son to a gas station shooting - he was just there, gassing up his car. We got to know each other after that - their opinion on white people (I later found out) was profoundly changed because I checked in on them each day for that terrible first week, and off and on thereafter. But I only found out because they had family/friends parked around the block, including around our corner yard. When I asked about it, I was devastated: he was another guy that thought it was funny that I played Halo. Another black guy, something incidental to our conversation, but race mattered in how the case was reported and treated. 

Now we lean on each other as needed. Hell, my dog Nissi came from a litter sired by their dog - the husband helped pick and nurture her specifically for me. He was under the opinion that I needed a dog for company as the Minions grow up and I am out in the yard alone with some frequency. So now I have a wonderful nanny dog that loves everyone but from her pit bull looks folks assume she only wants to eat their face and I am never hassled by strangers anymore. I take Nissi over to play with her dad and sister at least once a week, like neighbors might do.

Our mailman is Nigerian, he loves our dogs and chats. He is terrific at his job so we leave a card with a small token of appreciation in the mailbox at the end of the year. Not a big deal, really. 

I can keep going. I can re-agonize about the black kid under a white sheet that summer. He was only there because a cop thought he was suspicious or a suspect or something. He was unarmed, doing nothing illegal or unusual, just walking down the neighborhood street. When the Minions were younger he was one of the kids that got cold water bottles from me when they were running around playing like kids do. 

Some of those kids have grown, left, and now some are coming back. My guys get asked about that white lady with the cold water and if she is still here. It warms my heart to be remembered like that! I did not consider, however, that I was also the first white lady they ever talked to outside of school or other regimented experience. I was just looking after the kids like their moms.

Or I could rant about how we chose this for ourselves and the Minions. It was vitally important to me that the kids attend class with people that did not all look like them. Turned out, sometimes they were the only white faces in their class. I stand by that decision. Now the Minions are at a loss when they hear about how white and black people in the US sometimes see each other. They bristle when they hear about racism or racist practices. They are trained to get out in front when there is trouble because they are so much likely to fare better when interacting with authority. They have seen the school to prison pipeline. They have seen what I call the abstinence to poverty parenting pipeline.

We try to be good neighbors, like folks do. Every time a new family moves in, we introduce ourselves, if appropriate, as the crazy crackers on the corner. We affirm that we have lived in this place for over 15 years. Our neighbors ask about race and political issues more since the last election than ever before. I field these questions like when neighborhood girls used to ask me about white people hair - with patience and dignity. I tell the Minions to remember that even just to ask is to risk, so when they get asked race questions to do the same with the knowledge that the tenor of their response may determine if the folks asking ever try to do so again. 

What is the point here, then? To affirm that some of us do live what we believe, as much as we can, and raise our kids/Minions to do the same. To remind folks that our neighbors are not their neighbors, but at the same time are their neighbors. Once the racial tension settles, and folks know we are not, in fact, the villains in a Spike Lee joint, we were accepted as good neighbors. We had to get past our fictive kinship with other white people to show that we are decent folks. Although we did not deserve that distrust, we understood and accepted that we would have to be better folks to be thought of as good folks. We endeavor to do this every time we get new neighbors.

This is why I react with rage when black mothers grieve over the pointless loss of another black child. This is why when a mentally ill man was shot by a cop at a corner church here I was livid: the family had to raise money for a headstone while that cop was honored in event after event. Apparently shooting a crazy person is something that they honor. But to me these are people - kids and neighbors, not a dehumanized demographic.

This is part of why I get called a "race traitor" and shit when needless black death permeates the culture again for a few moments: I am not set to default white sympathy. My "we" is my family, friends, and neighbors... my "we" is not just white folks.

And yeah, I sometimes bristle when white do gooder liberals are accused of carelessness and callousness. I get it, and I never criticize the folks with that beef: I see it too, and the few holdouts like me and mine never outweigh legit beef over the movement as a whole. There is so much left to do, and current US culture is in full reverse mode regressing on everything from shrinking the franchise to struggling to re-stigmatize LGBT folks. 

Why post this? Not to excuse any past, present, or future race faux paux, hurt, or damage I may have caused nor to flaunt my meager efforts. I post this just as a way of pointing to a spot and saying "I am here." Maybe it will mean something to someone that needs to know that in this mess of a country and time there are still people out there doing what they can to do things differently. 

Monday, June 5, 2017

In Praise of the Meatsack

PatientC, holding a candle lit for mourning.

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

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

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

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

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

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

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

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

Monday, May 8, 2017

On Language

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

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

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

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

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

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

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

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

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

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

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

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

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

An "ally" that constantly steps on your foot and blames you for hurting, or for having the audacity to say "OUCH!" is no ally. They just want the warm fuzzy of thinking they are an ally with none of the effort.
No one blames anyone for having privilege. None of us get to choose the circumstances of our birth, our families, or pick the culture we were born into. Sometimes it really is just that simple. Political correctness holds us responsible for what we say and do, and is avoided by those that cannot stomach being responsible in that way.

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

Monday, May 1, 2017

SmartAss ProTips: Your Med Backstory

I want to have some resources here for you to use if you want or need them. While writing a piece on Go Bags, I realized that I had not talked to you about putting together a basic medical summary. This is the first thing you want in a hospital/medical BugOut/BugIn bag, or any travel bag for that matter.

Nissi (a black pitt) and Lucky (a tawny Chiwowow) keeping the neighborhood safe by sniffing a suspicious tree.

We will get into what Go/BugOut/BugIn Bags are, why you may need one, and a guideline of things to consider when making one. But before that, and Go Bag or not, you should have a MedStory!

MedStory is my own term for a unofficial medical history. Anything written my you will be considered unofficial - remember, patient reporting is considered the least reliable source of information around by docs, etc - but that was before "fake news." 

Even if you are not doing the whole Go Bag thing, you should do this. Even if you are healthy, you should do this. Keep a copy in your bag, in your car... You know your life best, so keep it where you know it can easily be found in an emergency. Since this will be too big to fit in the typical wallet, a note near your ID that indicates where your history is stored could save your life or the life of someone else if you are a organ donor.

I am going to give you what I think would be useful, and you can use or change it as you see fit for you and your family. We are going to cover information personal, medical, and medicinal. If you have a suggestion to add, please comment below and we will all benefit!

When you write your medical summary, imagine the conversations you normally have with medical professionals, only this time they need to know and you are unconscious with no family or friends present. There is a lot of information to think about here. You do not need to let yourself be overwhelmed by it. Take each suggestion one at a time. 

Ideally, you will have a summary for each family member. Even if you are around for your spouse, kid, or parent experiencing medical distress, this stuff is stuff you want to just hand off and not worry about - you will have enough worries.

Start with the basics: your name, address, phone numbers should be at the top. Another very important piece of information is your emergency contacts: their names, addresses, phone numbers. Who is your next of kin? Who is authorized to receive and act on your medical information? Do you have Advanced Directives (also called DNR orders). Do you have a medical power of attorney? You should have a copy of that in here, along with a notation of the location of the original, should it be necessary. Are you an organ/blood/marrow donor or on a registery?

While the rest of your medical information is covered below, next you should list your allergies, whether you think they would be an issue or not. Example: an egg allergy could really mess you up if you are given certain vaccines. So list them all is my advice! Make a note of each allergy & severity. Iodine makes me itchy, but penicillin will kill me.

You also need to mention any conditions, illnesses, or whatnot. Some people will list psychological diagnosis, and they can be important, but others are not willing to disclose them without establishing, personally, that it is pertinent and that they feel safe doing so. Sometimes an illness can be figured out by the meds you take, but do you really want people guessing at that moment?

You also want the names, addresses, and phone numbers of any health care practitioners you are currently seeing or have seen recently (last couple of years). If you have seen a specialist, you will always get asked why you saw them, so list that too (example: saw a pediatric gastroenterologist for stomach pain that resolved on its own or a physical therapist for SI joint dysfunction that improved with a completed course of PT). 

Now you need to detail what you are normally putting into your body. List any over the counter (OTC) or prescription medications you take, no matter how innocuous it may seem to you. If you take ibuprofen for occasional headaches, they say so. Please keep in mind that many prescription medications are used for more than one application, so list the reason you are taking it. Also list any herbal or homeopathic intake. 

I want to say if you are taking anything illegal, you should put it here because sometimes your docs really do need to know, but you have to make that call for yourself. 

So that is a good start. I will update this article as experiences or conversations make me wiser. If you have a tip, let us know below! I am considering making a Google form or something, what do you think?

Wednesday, April 19, 2017

Handbook for the Recently Disabled, Part I

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

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

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

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

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

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

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

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