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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.

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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, service dog

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

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Day 342: Life with Disability, Between the Pedestal and Reality

Discover Challenge: Mind the Gap

Living with a disability is no one’s idea of a cakewalk, least of all the disabled person. People who meet me on the street probably characterize me as happy and well-adjusted in spite of my difficulties. They see that because it is the face I work hard at projecting. They don’t see the antidepressants I’m prescribed, they don’t know that because I can’t drive it took me more than two weeks of bartering, planning ,and rescheduling to take this trip at all, even though it’s just to Walmart or the local mall, they didn’t see the frustration of having plans moved back for the third time in as many weeks. All they have seen, all they will ever see, is a polite, engaging woman in a wheelchair accompanied by a golden retriever and Australian Shepherd, willing to answer the same half-dozen questions she was just asked not five minutes ago by the people ahead of her and the check out line.

 

Sometimes keeping that up is the hardest thing I do in a day. So why do it? For me at least, the answer is simple. I keep the façade up because most people can’t handle the truth, it would either frighten or depress them or both I am not some celestial being without fault come down to cast some angelic light on those around me. Both my parents were military and my mother once lived in a Navy town, both things are quite evident in the level of creativity with which I can swear.

 

I have no memory of the universe ever asking how I felt about my life being seen by others as an object lesson. I accepted a long time ago that even though I don’t remember getting a vote, that was indeed how a lot of the outside world would be my life. As a kid who spent a lot of time in and out of hospitals, I went out of my way to make friends with nurses, doctors, and orderlies.I pride myself on the fact that I have never let the amount of pain I’m in dictate how I interact with hospital staff. I am no better or worse than the next person who makes for a difficult patient but I have the ability to remember that these people in the hospital did not willfully cause me pain for the purpose of watching me suffer, they are truly only trying to help. Not every person they take care during the day can see past their immediate pain and so I hope I have made their day a tiny bit easier.

 

Many people’s knee-jerk reaction to hearing the word disability is sadness.Statistically speaking, most people will have to deal with varying degrees of disability simply because everyone gets older. Recently my sister has started referring to disability as a lifestyle and initially I didn’t agree with it because I tend to use the word lifestyle to refer to things over which a person has a level of control and I have about as much control over being disabled as I do about the fact that I was born with brown eyes. I do have some level of control over how people perceive my disability though so perhaps lifestyle fits better than I initially thought. I do not want people to equate disability with sadness and I realize that for many people I know I may be their only reference to what cerebral palsy looks like. In fact, in my tiny town, I would not be surprised if I was the only reference to disability in general.I am naturally an introvert but will smile and talk to a complete stranger about my disability for as long as they care to have the conversation. I may have answered the exact same question 15 minutes ago but I will do it all over again. To a nondisabled person, disability is often scary and daunting, alien. If I can humanize it by answering the same questions 1000 times in a week or in a month maybe when the person in the wheelchair moved in next door they will ring the bell with a casserole in hand. If a person they work with is Deaf or hard of hearing they now make a conscious effort to speak more clearly and slowly so that person can read lips easier, maybe they even took sign language classes. If even one of those things happens to one person because of conversations I’ve had in the mall or in the grocery store then it’s all worth it I am not here to be an inspiration, what I here to do  is in some small way, leave the world in better condition than when I found itblue rose 2

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Day 340: When Happy Thoughts Just Won’t Cover It, My Ongoing Mental Journey

Image result for rain cloudsMy mother can tell you that I wrestled with anxiety and depression for years without the benefit of medicinal aid. She will tell you it sucked. How she and my sister never left sharp knives  or even forks in places where I could easily get them. At least once a week there was a solving meltdown and at least one month there was an argument about going to a mental professional. It’s not that I don’t believe mental health is a real and necessary aspect of well-being, I didn’t think less of people who have prescriptions to help manage their mental   balance. I just didn’t want to be the one taking the pills. It felt like admitting that I was, even more, an outcast. Mental illness on top of physical disability, who wants that label, especially in high school? I continued on in adamant denial until I was in college. I was having trouble getting my caregivers to show up on time so I can get to class. Many thought  I was just being a slacker and refused to believe me no matter what I said. This, of course, affected my grades and self-esteem. On top of this my very best friend, the one who got me through high school math and told me what I needed to know to successfully navigate having a disability in college, got Lyme disease, missed the window where antibiotics would kill it and was told that because of other health conditions as well as the Lyme disease he could expect a severely shortened lifespan. He would eventually die before I turned 30. Finding out my friend was sick was the straw that broke the camels back. I went to a doctor and said I can’t do this anymore I need help.

 

It’s  years later and I won’t tell you the medicine fixes everything all the time but it’s better. Some days still suck and there is not a single day where I don’t wish I didn’t need the extra help, but at the end of the day ,I like the post medicine version of me much better.To anybody struggling to come to terms with needing a prescription to help you be the best version of yourself, you are not alone and you are not weak no matter what someone else may say, especially if that someone else is in your own head. You deserve to be the best version of yourself you can be.

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Day 338: Back to School IEPS, Advice From Someone Who Had Them

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Note: The information in this post pertains to US public schools. Many other countries may have similar procedures but I am not familiar with them.  None of what stated here should be viewed as professional opinion of any  kind. It’s been a bit since I was in public school and I am in no way shape or form a lawyer so if you suspect your child’s school isn’t toeing the federal line, seek advice from a lawyer who specializes in the Americans with Disabilities Act.

Individual Education Plans, if you are the parent of a school-age special needs child you get familiar with these real quick. For those parents of special needs kids whose kid is just starting school,it’s basically a   chance for you to get together with your child’s teachers, representatives of the school board and any specialists who see your child during the school year. These specialists can include but are not limited to, an Occupational Therapist,Physical Therapist, and Speech  Therapist. If it is your child’s first IEP  it will probably just be your child’s teachers, the  principal, and the Special Education Coordinator for your county. The coordinator can, and should, be able to set up assessments with many specialists whose help can your child’s learning environment .

Here are some things about the IEP process you may not know. The first and, in my opinion, most important, thing to know  is that your child has the right to be present at any and all of their IEP’s. I started attending mine in second grade and continued   all the way through high school. You as the parent may not think it’s a good idea depending on your child’s disability and level of understanding but you should know that the school can’t refuse your child’s presence, even if it means they have to leave class early.

Your child has the right to add things to the document while in the meeting. My fourth-grade teacher had a wonderful idea to assign me an in class helper from my classmates who helped with everything except lunch. going to the bathroom, and pushing my wheelchair while outside. I still had my individual adult aide for the stuff the kids couldn’t help with and it helped me feel more normal.For reasons I still don’t understand  the lady who became my aide in the fifth grade totally refused to cooperate if the idea was continued. It didn’t dawn on me until last month  that I could  have called for a revision to my IEP and had it added and then she would have been forced to comply, like it or not.

An IEP is a legal document which everyone who attends the meeting must sign before the meeting can end.  IF anyone tries to tell you don’t have to sign or ” they’ve taken care of it” call them on their bullshit because that’s what is.(The county coordinator tried to pull that on us once, we were not amused)

Your child has to sign  if they are there but if they can’t you can sign their name and put signed  by with your name and parent or guardian in parentheses beside it.

One final thing I’d like to say is that even though it is always up  to you the parent whether or not to include your kid as an active part of their IEP process. I strongly you to do so if they are not developmentally challenged.They will have to be their own advocates one day, they might as well start learning self advocacy when your there to back their play.

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Day 337: To All the Parents of Special Needs Children Who are Mourning a Child Who Isn’t Gone, It’s Ok

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My name is Rachel. I don’t often put my real name in blog posts but these particular words deserve more weight than that of the blogging pseudonym  I fashioned for myself, they deserve the  name my parents gave me, because even though  I often write in other names, even answer to names  so far removed from the name they gave me that a stranger wouldn’t recognize both of them as belonging to the same woman,  I love my name and my family. My name is Rachel, I’m 31 years old and I have spent every single day of those 31 years with Spastic Quadriplegic Cerebral Palsy.

I’ll tell you a secret, this isn’t the life I would have chosen for myself. If I had been given a choice I would walk, skip, jump, just like everyone else. I would have marched to cadence like my mother before me. I  would’ve gone  to swing dance events with my  younger sister and with our partners we’d turn heads even when we didn’t win.

I would’ve eaten, slept, and breathed, fencing.  I would’ve climbed trees and learned to play the cello. There has not been a day since I was four years old that I haven’t mourned the loss,  or rather the futility of, these dreams. That girl named Rachel never lived but I see her ghost in the oddest places. Every time my sister got stranded or needed a ride she got into a car I still don’t have to pick her up. She got a job at sixteen , the real me, the living me , hasn’t had taxable income from a job in my whole life.

My point in telling you all this is not to whine about how terrible my is life is, it’s not terrible. My family loves and supports and encourages me to be as independent as possible. They encourage me even when it scares them. I wouldn;t have chosen this life but in living this unchosen life I believe I have impacted people’s lives in ways I might not have had the opportunity to if I were able-bodied.

I tell you this so you know its ok to be sad. You’ve spent months picturing this child’s life in your head, by the time they are born you’ve sent them into adulthood at least a dozen times. Then something changes and that perfect picture you built of your child’s life seems littered with roadblocks and pitfalls that weren’t there before. How will others ever see your child for the wonderful, beautiful spirit they are if they have to look past all the things that make them different first?

They are out there. Finding them may feel a little like panning  for gold but don’t give up. Take advantage of your nearest Early  Intervention program. That is still the first thing out of my mom’s mouth when talking to parents of special needs kids five years old or younger., they can teach you and your child healthy and safe ways to deal with tantrums among other things. Just because toddlers can’t quite grasp why they are different from their friends or sibling doesn’t mean they don’t know that they are and that can be very upsetting.

My final piece of advice, don’t be ashamed to say this is hard. As the parent of a special needs child,you will be that child’s primary voice for at eighteen years or longer, that isn’t anybody’s idea of a cake walk. If you find yourself overwhelmed by this task please seek a support group or a therapist, to effectively help your child you may need to help  yourself first and anybody who belittles you for showing human fragility probably couldn’t stand a day  in your shoes anyway.