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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 339:Gender and Race are Not Excuses for Violence

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I believe  that people’s lives intersect for a reason. Some stay for tiny blips of time that feel too short, others may stay far past the point we think they should. Positively or negatively we are influenced by others. Somewhere I heard a phrase, “leave this world better than it was when you found it,” and it’s something  I try to live.  The  older I get the more people I seem to know who don’t fit the gender binary. I have seen people ridiculed for not fitting into the box society has built around them without so much as a “by your leave”. News flash folks, gender is a social construct. Humans built what it means to be male and female. Biology determines DNA humans create gender. The concept of gender is malleable.Women should be able to do anything men can do and men shouldn’t be given  crap for taking on roles  traditionally thought of as feminine.

Also can we please stop the violence?There is way too much violence today. The “us versus them” mentality is rampant the racial divides were implemented by elitist bigots who use them to say to poor white people “well at least you’re not black or insert minority group”here, in an effort to make them ignore just how badly they themselves were being treated. It worked. Violence against the LGBTQ community (of which I am a part) is happening every day. I go to sleep with the nagging worry in my head that I will wake up to find that one of my friends has been tied to a barbed wire fence and beaten overnight while I slept. The violence against transgendered people is getting scarier every day. To the people who support “bathroom bills” because they are afraid that someone might attack a family member or a loved one I say to you that it is possible for a transgendered person to be violent or a criminal, being transgender does not make them violent or criminal. Most want to their lives, pay taxes and love their families just like everybody else. Look at it this way would you be happy if someone thought you were violent just because of the color of your hair or the car you drive? It is absolutely and totally ridiculous but these are the realities of life for a great many trans people. The area I grew up in isn’t known to be particularly friendly to those who lead nontraditional lives. I know this because someone in my family once went on a tear about how members of the LGBTQ community were going to burn in hell. They had no that I identify as bisexual. When I was in high school there was a young man who was always very conscientious about treating me like a human being which is not something I can say for everybody I went to school with. Several years later I have heard through the grapevine that he has since transitioned to being a woman. Even though she and I have not spoken since high school I worry about her every day. It seems the older I get the more my friends come from marginalized minorities. I know a trans person works as a paramedic on the third shift, we haven’t each other all that long but anybody who has known me for an extended period of time will tell you that when I decide to get attached to people I get attached with superglue, so every time he leaves for work a very small part of me worries a little extra.

Children are the future but children don’t know the things they need to until an adult teaches them. Every hateful word, ugly action, a moment of indifference teaches  our kids whether or not they’re done intentionally. There are massive social injustices in this world and one person can’t change them all but the tiniest rock shifting can start an avalanche of change. So I challenge you to be mindful of your actions with yourselves and others and maybe, just maybe, one day you’ll see that one tiny action of yours caused a cascade that changes everything for the better.

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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.

 

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Day 336:Thank you, Mrs. Alsup

When I started school in Tennessee after moving from North Carolina I was miserable. I had just lost all the friends I had worked hard to make in North Carolina , and I instinctively   worried that the civilian school culture would be far less accepting of me than the base school.  In later years I would find just how accurate that fear turned out to be  but the fourth grade was wonderful. Mrs. Alsup was and still is my favorite teacher from elementary school.She  and Mrs. Ryan , my in school aid,did everything they could to help me succeed.  When Mrs. Alsup had the  idea to pair some of my rowdier classmates with  me in a  peer helping system in class, she asked my parents but she also asked me how I felt about it and made it clear if I said no the whole  project was scrapped. I said yes and it turned into one of the most fun and enlightening things I have ever done. I  think she was one of the first adults to give me full veto power over an idea and mean it. This means a lot because I’m 31 now and still not granted that basic level of autonomy  by some people. I told you all this small stuff to get to the big thing, the thing she probably doesn’t even realize she did, Mrs. Alsup saved my life.

Fast forward to the fifth grade  As wonderful as the fourth grade was that’s how awful the fifth  grade turned to be. The teacher was great, my aide that was evil. Mrs. Ryan had decided to go to school to be a teacher and so I was paired with a new aid entering my fifth-grade year. This woman was verbally and/or  emotionally abusive every single day . She teased me and called me names because  I needed LOTS  of repetition to grasp math concepts. She yelled at me and made  me cry because bladder spasms I couldn’t control  made me have accidents at least once a week, which of course, she had to clean up. She chastised me about my weight, even though I was only eleven and had only just started to come close to weighing the same as other kids my  age. For a while, I wasn’t allowed to play on the playground because she didn’t want to push my chair through shavings. I was permitted to read outside during recess but I think  the other kids thought I was in trouble because I  was sitting with teachers and didn’t talk to me , meaning the baby friendships I had started the previous year fell apart fast.

Why didn’t I tell my teacher? She and my aid were friends outside of  school and I didn’t think she’d believe me. I know that I should have told her anyway. I could’ve gone to Mrs. Alsup, she would have listened  if my new teacher wouldn’t . At  some point that year I seriously considered suicide. The reason I didn’t try apart from worrying about my parents and sister, was the  love and time Mrs. Alsup put into me .

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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.