Posted in Uncategorized

Day 355: Running, Ableism, Personal Autonomy, and the Search for Space

rainbow shoesWhen you live with four other people it can feel a little claustrophobic at times. It’s also somewhat noisy not because there is anything particularly of note going on, it’s just that five people in one house aren’t exactly quiet even if they are not trying to make a lot of noise. When one of those people cannot seem to remember that it is polite to knock on a closed door and ask permission before entering, it’s even more frustrating.Some days I can barely hear myself think. So I appreciate the evenings when, if I’m lucky,  I can sit in the quiet living room with my laptop and write.I have been thinking a lot about the act of running lately. Running has always held a fascination for me, possibly because it is something that my disability keeps me from experiencing, at least as an active participant in the actual mechanics. I think my mom has carried me on her back while running and several people have pushed my chair while they ran,  so I guess I have experienced it in a passive, secondhand fashion.  It’s not the same.

Some people may think that driving my power chair at top speed is an equivalent,  it is a close approximation I guess, but still not the same thing. There isn’t really a whole lot of physical exertion involved. To those who say I am not missing much by skipping over that I say, you don’t know what you have, appreciate everything because tomorrow it could be gone in less than the blink of an eye.Sore muscles are a small price to pay for having your fellow citizens notice your existence. If you think I am overreacting let me tell you a story. When I was 13 years old I met a young man who was a few years older than me. For the first year I knew him I tried my hardest not to like him but he eventually won me over and became my best friend. 10 years later I’m in college and he is working on his Masters degree in teaching, he’s not even 30 and has already achieved two Bachelors degrees. That summer he takes a kayaking trip gets bit by a tick and contracts both Rocky Mountain spotted tick fever and Lyme disease. He misses the antibiotics window because it was originally thought that the rash on his hands was an allergic reaction. The last Christmas time I spent with him he was on forearm crutches had to use a scooter to get around Walmart. This was a guy who would show up at the drop of a hat say, “we are going somewhere”, and toss me and my manual chair in the back of his truck without a second thought. I almost cried before we even went into the store, it was about to get worse. We had gone there so that Nathan can get a few things for some Christmas gifts he was making, the rest of us were mostly window shopping. I had to use the restroom so I only heard about the incident secondhand but I returned from the bathroom to find my friend livid.with anger. Apparently, while I was gone he had carried some cloth up to the counter to have a specific amount he needed for his projects cut from the bolts. A woman who should have been behind him in line stepped around him and said, “oh this will only take a minute, you don’t mind do you,” not even speaking to him but to the associate responsible for the craft area of the store that day. He replied as though she had spoken to him, “yes, I do mind because I was in line before you.” He bought his lengths of fabric, met up with the rest of us, and left. I can tell you from having made several similar trips with him before he got sick this would not have happened if he had been able to walk. I cried for him that day, not because he was sick, but because he was well and truly in my world now. The smartest man I knew, who had already run four of his own businesses by the time I met him when he was 17, was working on his third diploma when most people I knew may have been halfway through their first, was reduced to one thing in the eyes of strangers,  an impediment. A roadblock in their routine, something to be skirted around, avoided, not even given enough humanity to merit the decency of a moment’s worth of eye contact. You think that any means of moving yourself through space is equal to being able to do so on your own two feet, you’re wrong.

The ability to run saves lives. Stand in the emergency room of any hospital for long enough and you’ll see. Soldiers in the US Armed Forces have to be able to run a mile in six minutes if they are ever deployed into a combat zone that six-minute mile will save their life more times than they actually want to think about.  If you run, you are seen. Caitlyn Jenner, Jesse Owens, you know these names.

I bought a new pair of shoes recently, black sneakers with rainbow shoelaces. I bought the laces and discarded the mundane black laces before even leaving the store.My family jokes that my shoes last a ridiculously long time and that this is one of the few “perks” of not being able to walk. They are right, my shoes may end up a little scuffed and the tread may pick up small amounts of dirt now and again from standing during transfers, but I will never wear a hole in them or have to keep them held together with duct tape. Yes, when you live in the South, duct taped shoes are an actual thing.

There is a scene from the movie Practical Magic where are the main character, Sally, runs and jumps into the arms of the man who will become her husband. Funny, the things that stay with you. I don’t remember exactly how old I was when I first saw that movie, maybe 14, but I do remember horrible, gut twisting anger at the fact that I would never be able to do that. Even though I am much older now and concede the fact that there are many ways to express that level of emotion I still feel a little bit cheated every time I watch the movie.

I’ve never been able to run in my dreams. I walked sometimes, albeit unsteadily. I have tripped a lot, fell on my face numerous times, belly crawled,  used my chair, or found myself stranded in bed because I’m unable to get up without assistance. I have never run, not once in my whole life.A  few weeks ago that changed. In my dreams, I panicked when a person I was supposed to meet did not show up in the usual place and without a second thought, I ran to find them.Weeks after the fact there is a voice in my head screaming,”Holy sh*t I RAN,” every time I think about it.

In case you’re wondering, I did not run, or even stand and walk completely under my own power the next morning, that’s not how dreams work, and I am in no way disappointed or upset. What I do find interesting is the fact that my dream self can run now when I have never been able to before. I can still run and it’s not a function of the blind panic that I felt the first time I ran. My best guess is the fact that I can now run in my dreams signifies positive potential that I didn’t have before, or at least couldn’t see or access before now. Change is in the wind and while it may not bear Mary Poppins, come to illuminate all our problems and put us on the path to fixing them, I have a feeling it might just turn out better than we thought.

Posted in Uncategorized

Day 354: Kimmy

Image result for yellow rose

Today I am reminded that I am lucky. Even though I was born with cerebral palsy with the exception of my orthopedic surgeries I have only been hospitalized for “normal” things, pneumonia,  strep throat, the flu. My immune system isn’t exceptionally weak, in fact, I am almost never sick and I have never even come close to organ failure, thank goodness.  My cerebral palsy did not come with a long list of other diagnoses, things to complicate and maybe shorten my life. So most days I forget that my CP reality isn’t everyone’s. Then someone who also has CP dies and just how lucky I really am shows up in the stark black-and-white newsprint of the obituary column.I often tell people that just because I have cerebral palsy doesn’t mean I know everyone with cerebral palsy in the state. I don’t know everyone but I do know a lot of people from my age group. I didn’t know Kimmy Jones as well as I might have even though we went to the same college and summer camp but I do know that she made a lot of people smile and laugh and as far as I know never did anything but inflate and enhance the lives of others. That is the best any of us can hope to be remembered for when we die.You will be missed, Kimmy.

Posted in Valkyrie

Day 353: The Valkyrie Project: A Voice for the Voiceless

https://i0.wp.com/authorkristenlamb.com/wp-content/uploads/2017/03/Screen-Shot-2017-03-08-at-1.08.54-PM.png

“The next four years are going to be shit for anybody who isn’t white, straight, male and Christian, but we’ll get through it.” That’s what Dylan said the night Betsy Devos became Secretary of Education. The world shifted under my feet and I  will admit to losing my cool but both my guys set me back on my feet and I remembered that blind panic never gets anything done.So I’m reworking an idea I started last year  I’m starting a podcast but rather than being disability centered like my original idea was going to be, Project Valkyrie is going to be a platform for all the groups American politics and media would like to pretend aren’t being treated horribly.I’m  going to set up an email for it in the next few days. As soon as its up and running I will post links to episodes here. I may end up talking mostly to myself but they only win if we let fear silence us and I will not let them have the satisfaction.

Tyrion Lannister is one of the strongest characters currently on television right now.   When my sister’s at the time boyfriend loaned me the  Game of Thrones books to read Tyrion instantly became my favorite character. Dwarf he may be, but nobody who meets him believes him a charity case or stupid after that first meeting  Tyrion’s advice to Jon Snow is sad but accurate. Some people will always name us “other” so we as well call a spade a spade and own it. No one ever benefits from making themselves smaller for the comfort of other.

Valkyrie

Posted in Valkyrie

Day 352: A is for Ableism

Image result for Calligraphy ASo Ann Coulter said that blind people and wheelchair users from other countries should be barred from becoming US citizens because of their disabilities. I’m not kidding, here’s a link to the recording of her conversation with Simon Conway’s talk radio show.She goes on  to suggest that we should deport all disabled immigrants currently in this country, because “we aren’t running a charity.” What the hell? So just because you’re disabled you can’t want the opportunity to change your life?  That is bullshit ableist talk Coulter and you should be educated enough to recognize it as such but maybe you aren’t as educated as I  gave you credit for so let me explain it.Those things you said are ableist, that means that you believe your currently able status means that you are more entitled, more deserving of things than me because I had the misfortune of a premature birth.Let me remind you of an uncomfortable truth, Ann,  “perfect” health is fleeting. You are one illness, one misstep in front of the wrong car, one fever away from being every bit as marginalized as I currently am. I am not petty enough to wish that on you, but perhaps you should remember that before you try to invalidate an entire segment of humanity.

Valkyrie

Posted in Politics

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

Posted in Politics

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.

Posted in Politics

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.