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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.

 

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Day 334:So A Podcast is More Work Than I Thought

I told a friend of mine about my idea for Gimp Radio… She was ecstatic and immediately sent me an article detailing 27 steps for getting a podcast off the ground and recognized by iTunes. It was a lot of information and I think I may have undertaken a much bigger project than I realized but I’m still going to do it. Another friend reminded me of something Mother Teresa once said: “we can do no great things, only small things with great love.”

Gimp Radio is my small thing. It’s going to take some time but it’s worth it. The disabled community deserves to have its voice heard its concerns given as much weight as those of our able-bodied neighbors. Historically  we have been told that in order for our concerns to have any validation we must convince an able-bodied person to act as our voice first, it is 2016 and that is a total load of crap. We deserve to have our own stories told in our own voices. That is why I believe Gimp Radio is so important. In the 21st century, I have seen many disabled people try to minimize the space they take up, I have caught myself doing it numerous times. I have the right to be here, I have fought and struggled mightily to master skills that many people take for granted and yet I still apologize for my existence, I have changed routines in my life to better accommodate other people but when I stop and think about how many of those people would change their routines regularly to accommodate me the list is woefully short.

If anybody asks me who my biggest advocate is the answer is always going to be my sister. When we were teenagers and I apologized for needing help, which I did a lot, she would tell me to stop apologizing for things I couldn’t change. She got to the point where if I apologized she would refuse to help me for 5 min. and every time I tried to apologize after that she would add a minute. She still does that and it still drives me crazy but I love her for it.

Gimp Radio is coming. It may take me a year or two to work out all the details but it is coming. I will be overjoyed if five people I don’t know listen to it because even five people make it worth doing again and again and again. If I can fundamentally change the way five people view, interact with, speak to, the disabled community then they can go on and change five more with their own influence and they can change five more, etc. People believe that social revolutions are the results of massive change but every great movement, every revolutionary act, started as a single person doing a small thing with great love.

Author’s Note: The friend who reminded me of Mother Teresa’s words is my friend Beth who I’ve  since known since summer camp and who was also my very first college roommate several years after summer camp . She writes over at In Case of Fire, Use  Stairs about many things including her faith and her take on life with a disability.

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Day 333: Gimp Radio or Help Me Name A Podcast

I spent Sunday afternoon listening to National Public Radio and a thought struck me. We, as a community, have always had unique struggles and challenges which we talk about amongst ourselves and our close family and friends. We feel hurt, angry, and sometimes bitter when the able-bodied world at large seemingly ignores our struggles and difficulties. Sure, the people closest to us know and hopefully, try to understand our perspective to the best of their ability and they might pass some of that information on to other people they know but what if the disabled community as a whole had a radio show, a podcast where a group of people with varying disabilities explained and/or discussed social trends and current events that affect people with disabilities. For example one of the first topics could be what does accessibility mean for you? Accessibility means different things to a wheelchair user  then it would to someone who is blind or deaf or is on the autism spectrum. If you asked an able-bodied person the same question chances are they would assume that a wheelchair ramp, grab bars in the bathrooms and maybe wider doors and an elevator makes a place accessible.as far as I know none of the movie theaters in the area in which I live have audio descriptions for the blind to describe the scenes in between the dialogue even though I know technology with exists that can do so. Right now this is just a seed idea but if it takes off I would love to have contributors from around the world, to learn what disability culture looks like in other countries. Right now I’m trying to come up with a name for this podcast. Oz came up with Word On Wheels which I admit is catchy but I would like to have a name that is more inclusive of all disabilities so I hesitate to use Gimp Radio or Crip Radio which are the first two ideas to cross my mind. Another reason I hesitate to use those is because some disabled people might be offended by my using them even though I only mean to reclaim the words that able-bodied people have used as slurs against us. At this point about I will take any and all suggestions, what would you guys name it?

Posted in Politics

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.