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

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.)  

Slurs Are Slurs But Are Not Other Slurs

So, Glee is doing things again – or so I thought. Sigh. I have not talked about Glee here because I do not watch it. Yes, I am aware of it as a subcultural phenomenon. That fact actually upsets me somewhat – I find their treatment of the issues of people of disabilities to be atrocious and disgusting. I know stupid, hateful people I can hang out around if I want to feel that way, thank you very much. So no Glee here, outside of watching clips to share solidarity with the people that are hurt when they watch it.

On Twitter I saw that Elon James White had tweeted about an article describing Glee’s latest screw up.

I completely agree that these slurs are not equal.

Now normally I am in the first wave of people to jump on Glee’s ass and point and laugh at the hole. This is not Glee’s project, though, it is the R-word’s project, part of the foundation that supports the Special Olympics, so I took a breath, went to their site, combed through it,  and thought about it some more…

My brain pan, let me open it for you.

First, I think that both the creators of the clip and some of the people decrying it seem to be ignoring all of the intersections at play. There are people with intellectual disabilities or neuroatypical lesbians, gays, Germans, Latina/Latinos, and blacks; I want to acknowledge that here.

Second, I went through their available content, and I think their point is poorly made but valid. The point is not a moral equivalency, but a resultant equivalency, I think. I believe that what they wanted to do was show people that may not otherwise consider it that this slur also delivers that sick, just punched in the gut feeling. That this word instantly conjures up a history of discrimination and oppressive so odious that even now people refuse to acknowledge that it even exists... if they even know about it in the first place.

Third, it is hard not to feel alienated by the line of reasoning used by some critics. Apparently, some folk feel that “retarded”, and likely also “lame,” “gimp,” “crip,” etc., are just not “as bad.” This is exactly the same wrong reasoning the commercial itself uses! The fact that there is no moral equivalency works both ways – it is hate speech. It hurts. That purpose is to wound. Do not try to feed me that “Oh, but I don’t mean it that way!” bullshit – if it was not meant negatively, you would not be using it to describe something you view negatively, okay? Okay.

For those of you thinking that “retard” and “retarded” simply do not have the same impact because they lack history, you are mistaken.  Retard is a word that went from a specific diagnosis to slur in our most recent century – but discrimination against folks with mental disabilities has a long and sordid history. This is just one of the more recent slang insults used in conjunction with a fear and hatred that is so old and so widespread that the origins of it may never be found (the above link sites the first technical writing about it to 5 B.C.E.).
 

(I am not even going into all the bullshite that still happens today to people with disabilities: the discrimination, the forced treatment, the "good cripple" and super-crip memetic weapons, the "mercy" killings, the astonishing rape, abuse and murder statistics, "angel babies," and so on and so on... The fact that this is still mostly invisible disgusts me.)

People perceived as being outside of some generally accepted social norm of mental capacity and thought have been discriminated against forever – tactics have extended to banishment, forced sterilization, torture, and even death. And until fairly recently (historically speaking) other “trouble makers” such as homosexuals, uppity women, and political minorities (to name but a few) have been labeled mentally incompetent in order to silence and discredit them while also subjecting them to the same treatment.
 
Forth: remember what you learned about the Holocaust? Do you remember learning about the six million Jews, a terrible atrocity that should have never been allowed to happen, right? Right. But you should have also been told that the grand total of people slaughtered was closer to ELEVEN TO SEVENTEEN MILLION.  I am not even going into the military and civilian deaths caused by the war itself; just about purposeful exterminations at this moment. All those other people included, but are not limited to the following: homosexuals, political dissidents, other religious dissidents, Romani, and… people with disabilities! It is a sorrowful thing to see all of those people forgotten almost every time the Holocaust is mentioned. I will never, ever degrade the suffering of the Jewish people during the Holocaust – I want people to remember that they were not alone. 


Are disability slurs the same as racial slurs? No.

Are sexual orientation slurs the same as disability slurs? No.  

Each slur is unique, designed to hurt one specific group of people in specific ways - to justify atrocious treatment with little to no guilt on the part of the abuser.

Do they all carry long, dark histories of discrimination, oppression, and murder? Do they all carry the inherent intent to dehumanize, to "other", to separate?

Yes.

They are all wrong.

Thank you for sticking with me through this piece, I appreciate it. Please do not see my limited linking above as a indicator of sparse information - there is plenty out there if you make even a basic effort to look for it. I am just out of spoons...