Day 351: Nonstop

I found the tracks for the musical  Hamilton on Spotify last night. They have been on repeat since then and everybody in my house is probably sick of my singing by now. I don’t really care. It’s that awesome. I love the whole thing but my favorite song is probably  “Nonstop”.  “How you do write like you’re running out of time/Write day and night like you’re running out of time? / Every day you fight like you’re running out of time.”

This is what I’ve been doing, writing, whether conversations, emails, or blog posts, it has been near constant writing with just as much urgency, though the reason for the urgency is not something I can quantify or explain. I only know that I have to write.   Writing has never held this kind of energy for me, never. Maybe we are heading for a second Revolution. Maybe this urgency comes from feeling the gaze of history on the back of my neck. If we do see a second revolution I  hope we don’t see as much bloodshed as the first time. My experience as the daughter of two soldiers says that it is very likely a pipe dream.   I find it interesting that Hamilton, who was, and is, revered for his writing, spent so much of his time wishing to be something more than a secretary while never once denying that his skill in writing was formidable. I feel as though  I  may as well be looking in a mirror.  I would never presume to compare my writing to his that be crazy.  I feel as though I have similar motivations. I have named myself Valkyrie, and if my sword masquerades as a pen so be it. When you’re living on your knees you’ve got to rise up, every story is worth telling.  You have no  control who lives, who dies, who tells your story, but maybe by being  the keeper of other people’s stories now someone will tell my story one day

My name is Rachel Kestner and there’s a million things I haven’t done but just you wait.

Image result for hamilton musical

Advertisements

Day 350: The Things That Keep Me Up at Night

Image result for claymore sword

If you had told me in  2015 that I would be here in two years time I would have shaken my head in disbelief. Of course, if you had told me how the election was going to pan out I wouldn’t have believed you either We now live in an America where many marginalized people find themselves not just ignored but actively persecuted by our federal government.   During the campaigns leading up to the election, Mr. Trump gave a speech in which he said he would use the armed forces to deport American citizens of the Muslim faith. I didn’t see the speech but I know about it because a mother came home that day to find her seven-year-old little girl very seriously packing a small bag for when the soldiers came to take her family away. The mother posted about it on Facebook and response she got back from hundreds of former and current military as well as civilians promising to protect that little girl made me cry. The idea that Mr. Trump’s threat is even plausible now scares me.

A good friend of mine is getting married soon. Her mother moved to this country from Pakistan as a teenager. My friend isn’t Muslim and as far as I know the only other language she speaks is the Spanish she learned through our public school system.  She and her younger sister really take after their mother and that has led to some very ugly things being said, especially after 9/11. Then it was just some scared poorly educated redneck teen, who much like the rest of us who hadn’t quite reached adulthood yet, was probably repeating things said by a family he assumed were correctly informed.  Now, there is a poorly educated adult with a lot more power spewing the same narrow-minded trash talk.I am afraid for my friend’s family.

Is it just me or does there seem to be a social war waged against the trans community lately?  I have always felt the necessity of standing with others in an effort to validate stories that aren’t mine. Except now, unexpectedly, these stories are part of my story. Now, this struggle puts an icicle of fear in my heart on a regular basis. I love a trans person with a much bigger part of myself than  I would’ve thought possible if you had told me that this was coming two years ago. When I love someone I worry for them. Lots of times I know that my worry is blown out of proportion and I talk myself out of most of it.

I can’t do that this time.This fear doesn’t feel silly or overblown. I joke that I’ve become a bat now. I’ve been a night owl for a long time but it’s no longer uncommon for me to see a sunrise before I ever see the inside of my eyelids. I do this because talking to him feels similar to breathing, as unconscious and as necessary, and he works third shift.

I do this because somewhere in my head and heart I believe that if I talk to him during his shift I can keep him safe.If I can’t tell myself that my worries are silly, then I will be the sword at his back. There has been a half joke in our house for a while that our parents raised Valkyrie. I will be a sword at all their backs for as long as is needed. We are now facing the choice between what is right and what is easy.Trump was the easy choice, I’m still waiting to see if we can make the right one.

Day 349: The Power of Words

Image result for paper heart

Most of us have probably heard “sticks and stones may break my bones but words can never hurt me.” I have dealt with more than my fair share of verbal abuse in my life and I can tell you that words can hurt. Words can leave scars that last forever. I have only just begun to make peace with those scars, fifteen years after the fact.The current White House would like to use words to divide us. White, black, latino, middle eastern. Christian, Muslim, terrorist, patriot. Gay, straight, transgender, rich, poor. These words may be part of our identities but they are not the beginning and end of them. We are also mothers, fathers, sisters, brothers, friends, neighbors, lovers and humans.Too many people want to turn us against each other because if we’re squabbling amongst ourselves we are too distracted to notice when much bigger issues  We can’t let others dictate what makes us afraid.We are better, stronger than that.Before you let the political vitriol currently being circulated use your voice as yet another echo chamber use it instead to talk to those people you are supposed to hate and fear.Use your ears, heart, and voice as tools of compassion. John Lennon had it right all along, all you need is love and sometimes love is scary but it’s always worthwhile.

Day 347: At the Closing of the Year

Image result for toys movie poster  One of my favorite movies of all time is the Robin Williams movie Toys, if you have never seen it I believe it’s on Netflix and right now, or any time leading up to New Years is a great time to watch it. One of the songs from the movie,”At the Closing of the Year”, has a line in it, If I cannot bring you comfort then at least I bring you hope.  That is going to be my goal for at least the next four years. I’ve said many times that the idea a Trump White House scares me, it’s more than an idea now, it’s reality. Now is not the time for quiet acceptance of Trump’s America. Fear tactics and hate speech and bigotry have no place in my America. We, the marginalized citizens of America have been conditioned not to make waves, to stay safely quiet and let white, mostly male, able, straight people speak for us, we’ve seen how well that turned out.  Trump wants us swept farther under the rug at best and gone at worst. Speaking up and out is scary when you think you are alone, so to close this year and begin a new one I’m offering an open hand. Anybody this reaches is welcome to contact me, I will be a listening ear a steadfast shoulder. If you want to tell your story but are afraid of reprisals, I offer you the platform of this blog and the cloak of anonymity. Tell me your story, I’ll be your voice, do a guest post. Or I can just listen. It doesn’t have to be a story similar to mine. Anyone who needs a protected space is welcome.

Day 345: Facing a Trump Presidency, Lessons Learned From a Golden Retriever

When Gideon was seven months old or so he saw his first full-size horse. He had already met my miniature guy but there is a world of difference between him and a saddle horse who is at least 15 hands tall. Even though the bigger horse was not doing anything even remotely threatening, he was only looking over the pasture fence, for a moment Gideon was totally freaked out. He moved to hide behind my chair and then stopped as though he realized that he would be leaving me to face the big scary monster by myself if he hid. He planted himself squarely between me and the horse and barked, in that single moment he grew up.

Donald Trump as President of the United States scares me for more reasons than I can adequately articulate. The people he’s putting in his cabinet have little or no concept of what it is to struggle for basic human dignity. Even more frightening, I read some of the things that they have said in an interview and I realize that they have absolutely no empathy. Trump is considering dismantling the federal Department of Education, leaving the governance of schools entirely up to the state. In theory, this does not sound so bad until you realize that Texas is considering a bill which would put a cap on the number of special needs students who could receive services through the school system. in case you don’t have a special needs student in your life let me explain what this means. Right now there is a federal law that says special needs children must be educated in an environment as close to that of their nondisabled peers as possible, to this end, public schools must provide services and accommodations which allow the student to fulfill their academic potential as much as possible. To use examples from my own experience, I saw a speech pathologist several times a week during elementary school to help correct and mild impairment. The school paid for this because it would help me communicate more effectively with my teachers and classmates. I also saw an occupational therapist, they gave me modified utensils so that I could eat my lunch with a minimum of assistance from an adult. The same occupational therapist tried to teach me cursive handwriting when my classmates learning it, with adapted pencils and special paper and when that didn’t work it was the occupational therapist who insisted that I have a computer to write the answers to my spelling tests, so the dictating to my aide would not interfere with my classmates taking the test. In high school that computer became a portable battery powered word processor called an Alphasmart, a tool that I enjoyed using so much that I recently looked up the company and bought one for myself as an adult.

The bill the Texas legislature is trying to pass would mean that once they reach a specific quota of students the school system would then deny services to any other special needs child because quota had already been filled. Pres. Donald Trump scares me and there is still a huge part of me who wants to run as fast as I can to Canada, stick my fingers in my ears and hum,”not my problem anymore.” The criteria for moving to Canada is not something that is accomplished overnight and my boyfriend has a good reason to want to stay.Besides that, Trump and people like him are always going to be my problem. I am a special needs adult, I bear a  responsibility to the children and young people growing up with the same label to make sure they have the same opportunities that I was fortunate enough to have and to make the system better where I can.

So much like my Golden, I will stand in the breach and face the thing that scares me most, because behind me there are those who cannot defend themselves, even some who cannot comprehend that the danger is there at all. I will hold the line, today, tomorrow, for as long as necessary, because I became an adult when I wasn’t looking and now it is my turn. To President-elect Tromp, “not my children, not today, not ever.”

my-sig-22

Day 343: A Badger Goes to Battle

Image result for hufflepuff crestThis blog was never meant to be about national current events or political commentary it was never meant to have a specific focus or niche even though I have never made any secret of my disability or anything else. Then the 2016 election happened. Bernie Sanders happened. The North Dakota pipeline and the protest at the Standing Rock Sioux Indian reservation are still happening. President-elect Donald Trump is actually happening unless the electoral college refuses to back the popular vote, something which they haven’t done in years. In spite of being good at public speaking, I never wanted to be the person behind the podium or on the stump saying, “hey, listen to me!”The thing about drawing attention to yourself is that if you make enough noise people actually look. They pay attention to the words coming out of your mouth, every single one and suddenly every little misstep you make, no matter how little, is noticed. The margin for allowable human error becomes seemingly minuscule. 2000 military veterans showed up at Standing Rock Reservation to be a human shield for the pipeline protesters.. Pick on someone your own size big oil. I have never sought to be a revolutionary,  a rabble rouser. Time doesn’t fix what is broken, intent, courage, and actions fix things. If the pen is truly mightier than the sword, do not come into my community seeking to squelch it  with hate and greed and expect me to say nothing because the world is my community, humanity is my business and you have just made a very big mistake.’

Author’s Note:
Yes, I am a Harry Potter fan. Yes, I am a Bernie supporter. No,I do not think Donald Trump should be allowed to be the POTUS and oil companies should stay the hell off tribal lands. I apologize for nothing.

Day 341:Service dog bias

My golden retriever turns six in April. He is still extremely willing to go to work but a knee injury that he got when we lived in Colorado making it difficult for him to go up and down stairs at times. So we have decided that it is time to start training another dog so that he can retire in a few years.He is still going to go everywhere with me but so is the puppy one she is housebroken. Medical school has a saying “see one, do one, teach one,” and that’s the theory I’m using. She is not a golden retriever, I considered another one but I didn’t want to fall into the trap of expecting her to behave exactly like Gideon, that’s not fair to either of them. She will be my first Australian Shepherd. I know they are high-energy but I believe I’m up to the challenge. At this point, I would like to address something that frustrates me immensely. Service/assistance dogs are often separated into two categories owner trained and program trained.  Gideon and Nekoda, (named for the main female character in Sherrilyn Kenyon’s Chronicles of Nick book series), fall into the owner trained category. Many owner trainers do so because waiting lists for program trained dogs can be several years long and many require that the service animal is the only dog in the house. Some people are willing to make that choice and rehome a pet dog to comply with the program stipulations, I am in no way trash talking the person who chooses to do so, or the program for having those rules. The fact is that most people do not  expect the same level of behavior from  their pet dogs as is required in a service animal.

Training my service animal has been my personal crucible.I’m not the same person  I was five years ago. I am no one’s doormat or rug. Training my dogs has given more self-confidence than almost any other experience in my adult life. After the recent election, I need every bit of that confidence. In  the face of a very real and very worrisome  Trump presidency, we as service animal handlers need to shelve our bias and preconceived  notions of each other. Someone once told me that our first and best advocates  are always ourselves. We can’t be the advocates we will need to be for the next four years if we are fighting among ourselves.

mom-gideon-nekoda
Mom, Gideon, and Nekoda

Day 335: Windows 10, Suffragette and Mary Poppins, or How Glynis Johns Introduced Me To Femenism

Earlier this week a power surge during a rainstorm killed the power supply for my desktop computer. The original  plan was to replace the power supply  now and get a new laptop around November/December. Dad came home with the power supply and a new gamer’s laptop .Uncle Paul is going to fix and then inherit my desktop because his laptop has seen better days. If anyone reading this is thinking of upgrading to or starting with Windows X it bears little resemblance to the previous incarnations of the Windows operating system, For instance, it works best with touch screen capable computers, which I didn’t realize I had until Oz, my boyfriend, tapped the screen to take a picture while helping me set it up. Color me floored.  My parents have always been fairly tech savvy, I remember hanging around the net on a  dial up connection via Prodigy when I was eight but touch screen computers and tablets  were things I never thought  I would see.I still need to transfer my speech recognition software to this computer but that’s a fairly simple thing.

I got my first DVD from Netflix this week. Suffragette.  I knew the suffragette movement in Britain had been more militant than its U.S. . I knew vaguely of hunger strikes, women jailed, broken shop windows and small bombs in letter  boxes on street corners. I knew of these things first from the unlikely medium of a Disney film. Remember Mrs. Banks from Mary Poppins? She  was part of the British women’s movement and a lot of her dialogue makes references to it. I found out recently that, when she approached for the part, Glynis Johns almost insisted on her own song in the movie, and that’s how  “Sister Suffragette,”was born. It was because of that song that I first asked my mother what a suffragette was, (I think I was six) and from there I learned about Elizabeth Cady Stanton and Susan B. Anthony and the notable women from the American movement.

It was some years later, middle school at least, before I realized that the dramatic extreme things Mrs. Banks had said  were also real. Real things that had happened to real women. Watching Suffragette I saw it and was horrified and humbled all at once. Shocked and stricken at the lengths these women went to reach a goal my generation  and many before me take for granted.

This  coming  Presidential  election has caused me a great deal of sadness and truthfully I had almost decided not to vote this year.  Seeing that movie reminded me that my place in the electorate was bought with a blood price and I will not scorn such a precious gift , no matter how undeserving the candidates.

Day 332: Stories from Childhood or Why I support #BlackLivesMatter

 

As far as I know this is not an actual picture of Sugar

 

My family says I have an elephant’s memory. but I do forget things. I can’t even guess what I had for breakfast last week. I remember important things,birthdays anniversaries  but not just dates, anything my mind labels important, though rarely am I aware of this labeling at the time.

I am four years old and we are visiting Mr. and Mrs. Cole, church friends of my grandma, shortly after  my grandpa’s death. They were the first black people I remember knowing. I think Mrs. Cole was the person who gave me my first glass of sweet tea. Their house was small but filled with beautiful antique furniture (Mr. and Mrs. Cole’s house was also my introduction to the proper usage of doilies and coasters) and a beautiful wooden bead curtain that was the absolute definition of adventure when I was four years old.

 

I cannot say for sure if I ever knew what Mr. Cole  did for a living, for some reason my brain says he was an electrician or plumber but I can’t remember how I came to have that information. I thought he was a retired pirate. It was Mrs. Cole’s bead curtain that put the fantastic notion of piracy in my head, that and the fact that I never remember Mr. Cole saying much other than hello when we came to visit. His favorite chair sat in front of the biggest window in the living room so that he was almost always cast in shadow, in fact, it wasn’t until relatively recently that my memory added enough details to recognize him as human rather than as someone formed entirely of shadow. It was his quiet demeanor that convinced me of his former profession. If you had spent your youth as a pirate on the high seas and then decided to settle down you would not talk about yourself much, piracy is, after all, a criminal offense. I believed that he brought home all that beautiful furniture and the wondrous bead curtain as gifts for Mrs. Cole. I did find out much later be the far more mundane story of how she actually got the furniture but I am still quite fond of my outrageous tale.

 

The first biracial person I ever met was a young lady with skin the color of coffee  with cream in it. She had one blue eye and one green and I thought she was gorgeous. She was the niece of one of our neighbors at Fort Bragg who came to visit her cousins every summer. She was the first deaf person I ever personally knew and even though I was horrible at signing we somehow muddle through it because thankfully I could understand more sign than I can actually produce so our conversations might be described as a person who speaks a language fluently talking with a person who only knows the pig Latin version of the language but Tonya was a good sport who never made me feel bad because my physical limitations made it difficult for me to communicate with her. Our conversations very often resembled a game of charades, much to everyone’s amusement.The family who lived right next to us had a cat that totally fascinated Tonya. Sugar was white, polydactyl (he had extra toes)  with one blue eye and one green, just like her. who was also deaf, just like her.  She doted on him every time she visited.

 

It has been years since I’ve seen or spoken with Tonya and Mr. and Mrs. Cole died years ago.Whenever I post or share something supporting #BlackLivesMatter it in their faces that I see first. People whose acquaintance gave me some of my first lessons in kindness, politeness, bravery and adventure. I worry about Tonya on a daily basis. I find myself hoping that wherever she is her disability protects her from the epidemic of madness we are currently living in. I have found myself hoping that people who might otherwise hurt her are careless enough to mistake her for white. I worry every day that instead of being a shield her disability will instead paint a target on her back, be a contributing factor to her victimization. I haven’t seen her cousin Chris in ages either, my neighbor, the boy whose loose tooth I knocked out when I swung wide of the punching bag he was holding for me and hit him instead. The second boy I ever had a crush on, even though he was predictably clueless.Whenever there is some new occurrence of racial violence I tense up, worried that it will be his name under the picture of a young black man  whose face would be unrecognizable were it not for dental records. Every time a light-skinned black woman is assaulted I breathe a sigh of relief that her eyes are the same color. I thank the universe every day that Mr. and Mrs. Cole did not live to see this insanity. These are the people I love. This is why #BlackLivesMatter matters to me.

Day 331:#CripTheVote,Nothing About Us Without Us and #BlackLivesMatter

If you haven’t seen this video yet I encourage you to do so right now. I learned a few things that I didn’t know even though I have been disabled my whole life. I will tell you that it is largely fear of losing my disability check which has kept me and Oz from getting married… What would happen if he got laid off and our family didn’t even have my check to fall back on? My parents routinely refer to him as my fiancée but we’re very careful to avoid such phrasing when talking to someone who works for the Social Security office because we’re afraid they will penalize me for anything that even remotely sounds close to a declaration of intent. The part about it being legal to pay disabled workers far below minimum wage is also true. Goodwill does it all the time and then pat themselves on the back and says that disabled people should appreciate the fact that they have any jobs  at all. I am not making that up the CEO of Goodwill actually said that in an interview I saw within the last two years. A doctor once told me that because of the differences in how my body functions the reason it felt like doing every day normal things felt like it took me 10 times more effort than it took an able-bodied person to do the exact same thing was because it actually did, it wasn’t something made up in my head.

 

If we went by that logic disabled employees would shock most of their able-bodied bosses if they asked to be paid based on the amount of effort it takes them to complete a job. We are not asking for that,  though, we are only asking to be paid comparable wages to those of our able-bodied co-workers. The minimum wage for able-bodied people is arguably not a living wage but it is a whole lot closer than $.18 an hour which is what the Goodwill Corporation gets away with paying some of it disabled employees based on timed “performance evaluations” which consist of putting as many clothes on hangers as possible. Someone standing over them with a stopwatch and they are allowed three mistakes before their pay gets docked. I don’t know about any other physically disabled person but for me personally my spasticity comes out the worst in situations when I feel like I’m being put on the spot which means that if I were their employee the worst time to assume an accurate representation of my abilities would be when someone is standing over me with a stopwatch.

 

Many kinds and well-meaning people have suggested Goodwill as a possible place of employment for me over the years. Prior to learning about how their performance evaluations are done I have always said thank you but I’d rather not, citing the fact that I find their commercials featuring disabled people to be patronizing and smacking of what I would term as a “benefactor complex,” the commercials always seem to say “look at us aren’t we wonderful for deigning to give this inferior person busywork and a pittance of a wage while we exploit them because half of them don’t know any better and the other half are too grateful for the smallest crumb to complain much.” That was before I knew about the practices now I would probably slap someone in the face.

 

In truth, I do not think I have ever felt like a presidential candidate truly shared my concerns. Say all the negative you want about Pres. Obama but when he was during his town meeting tour he helped a caregiver on her work shift so that he could make the time to talk to her. He changed the man’s sheets, made him lunch and had a conversation with both of them. Not a single president before him has done anything like that. Not one. A blind deaf man (who I believe is a lawyer) was invited to the White House and Pres. Obama didn’t even blink when the man requested that they used a special keyboard which would change the type text into braille that the man could then read even though the President had no experience with the device whatsoever prior to meeting this man.

 

The only way I currently see for the White House to be seen as taking the concerns of its disabled citizenry as seriously as they must be taken is to elect Bernie Sanders for president. Donald Trump does not care about anybody but himself and  sure as hell do not care one iota for the disabled community. As for Hillary Clinton I can’t trust her path as far as I can throw her, she may give lip service to the disabled communities but it is mediocre at best and she only started doing so to keep up with Bernie.

 

To able-bodied people who may be thinking why should I care about these issues? I say two things… 1 Someday they will be your issues too,you are one illness, one accident, one choice, from being a member of our community. Perfect health is a fleeting and fickle thing. 2 We may be the largest minority in the world but we are still considered a minority. We have been screaming for equality for years that the able-bodied majority talks over us all the time. We need able-bodied allies willing to tell people to sit down shut up and listen. The great thing about alliances if they work both ways, help me fight my fights and I will be in the trenches with you over yours. The 1% has a great majority of the 99% fooled  into thinking that labels really matter, there are people within the 1% who will step on our necks and crush us like ants and they don’t care what color our skin is. There are so many good and necessary movements going on right now that can only be made stronger if we collaborated, if my movement became your movement in your movement became mine.

 

Black Lives Matter. Every bit as much as mine does. Police violence against people of color for no other reason than they are people of color is wrong. As citizens of the United States, we talk a lot about freedom but the sad fact is that some of us are much better talking than walking. Our history has given us this idea that all men are created  equal in this country. The sad fact is that it has fallen short and forgotten to include a great many of its citizens. I sure as heck did not feel as though I am treated the same as an able-bodied person. It’s 2016 and women still are not paid on par with men who have the same skill set. That’s not  equality. A high school cafeteria worker shot while reaching for his license and car registration just because he also happen to have a firearm which was legally registered to him in the same glove box as the car registration is not equality. For a long time I have done my best to keep my blog politically neutral but sometimes all silence does is help the wrong side win so far an indeterminate future my blog will be exactly as political as I feel it needs to be. Nothing About Us Without Us. All Of Us.