Music=life

 Okay, so of course I have to be a little bit contradictory. After everything stupendously wonderful I just said about Deaf culture, I must admit that music is a huge part of my life, I don't know where I would be without it. I'm not saying that those who can or can not experience music in the same way are somehow any less than, or do not have a better life. I'm simply saying that everyone has a medium. And this is mine.

 Music has been a huge part of my life.

 Music  has been therapy

  When you can identify a song that is so  in tune with your exact feelings,  you know  it's a part of you.

 For those of you who don't know, I sing.  I can sing. I love to sing. I need to sing. I think this song sums it up pretty well.

 For those of you  who want to know what I must always   have  playing, you can share this.

 Enjoy!

Dear X.....

 If you read this, I think you are smart enough to figure out who you are. And you're welcome. 

Dear X,

 Friends  often don't know how much little things matter.  When I met you  earlier this year, I certainly didn't. 

 I didn't know  how much it would matter that you can always make me laugh. Without fail.

 Although you may not  understand everything, you understand some things about me in many more ways than one. We speak the same language, several as a matter of fact, and you really have  accepted me to the point that you can.

 I also know that you are  a selfless human being, and also just that, a human  being. Every single time I ask for help is not without gratitude and understanding. Yes, I am frustrated, because my situation is frustrating, not because of you. 

 You are tired, I can see it in your eyes and in your head. I can hear it in your words. We come under stress in very similar ways. It's really none of my business what you are worried about, but that is when I think you understand something that you don't realize.

 Whether it be from a multitude of other things, or from working long hours of stressful, thankless work, I think you now understand why I work so hard to live my life the way that I do. Because you live the alternative. Now I'm not saying that this place  does or does  not  treat you well, but I've heard many stories, I've seen it, I've been there. And that's why I can never ever bring myself to do that. As “safe” as it may be.

 “ You have 5 minutes, go help this person, go now.” I know this is what they say, and  I know that you know this is not what they deserve, because you, too, are a human being. You want  to treat them like one, but you can't, you don't have time. And you want to be treated like one, too!

 It makes me want to cry every time I see you, or don't see you, so tired that you can't fucking hold your eyes open. You may not think I notice, but I do, and  I know why.  You are doing this to help the people, but also because you need to. And for that, I don't blame you at all. After all, I've always said, “come work for us and be treated like shit”  is better than “ hey, come hang out with me and make crappy money or no money at all.” This is the sad truth, and I know it.

 When you met me, I wonder if you thought  of me as one of them. I wasn't some decrepit old person that stays in the senior center, I am a smartass who likes to live it up just like you do. I wonder if that has changed now. Do you see me as  dependent, lazy? Needing to be supervised?  It kind of hits you when “those people” are just like you, doesn't it?  When they are the ones in control, as it should be.  You understand.

 You understand that I'm tired of seeing amazing people like you broken down to the point where they can't take it anymore, and we, as a people, will suffer.

 You understand that there are few people like you out there. People just don't care. They just don't.

 You understand that I am  more than sick of this being about money, and not about people. If I had $25,000, you understand that I would give it to you in a heartbeat, because that is what people like you deserve.

But, unfortunately, all I have to give you  is my sincere gratitude, sarcasm, and maybe a few corny jokes along the way. You understand that, too.

 You have always been honest  with me, and I know that if you see this, you will tell me the truth. That's what I like about you.

 But for now, I just need you to understand that you are appreciated.

 Understand that you are loved.

 (For the record, I wish I could write  awesome pieces like this as an ode to everyone,  but for now, this one had been looming around for about the past month so I had to start with this)  :-)

 

Quiet Mouths, Loud Hands

The purpose of this post is twofold: to give some reflections on this and this, and to put a whole other spin on it that is more related to my own personal experience.

 First  of all, I'm not autistic, but I know many people who are, and they are all awesome.  Second  of all, I've  seen these types of tactile techniques used on many other people, including myself for muscle stimulation in various other ways. So  I have several issues  with it in that regard as well.

 While I understand  that the principal behind this is all well and good to teach people the more “appropriate” times to touch things, I feel like this could be taken advantage of to stifle communication and interaction on  so many occasions. A very good friend of mine always fidgeted with his hands on the desk when he was nervous  in school. I never understood why all the other kids moved 50 feet away from him. That's just what he did. I remember one day when somebody yelled at him for unconsciously fiddling with their pencil. He put it back and apologized, but this person took it as some kind of personal violation. I was amazed.
 So basically, autistic people are awesome, and I'm so glad that they, not so-called representatives, are speaking out for themselves in various ways.  But this first  post brings up a whole other set of issues to me.

The Quiet Hands philosophy  ignores a whole other form of communication. Sign language!

 At the beginning of this school year, after  a renewed interest in the last 2 years, I decided to officially learn ASL. Now, you're probably thinking “why the hell would a person with extreme spasticity and motor planning issues ever want to do that? The answer: Because it's fun!

 Okay, well really that's only half the answer. The other half has to do with the fact that I have met a lot of nonverbal  kids and adults who could hear but used a form of basic signing to communicate. I had been around it for quite a while in the SpEd classrooms  and I wanted to learn more.

 A lot of people, myself included, always have preconceived notions of culture they know nothing about. Not knowing a lot about the history behind these people, or, well, really anything else except for the alphabet, I decided to learn about this culture in conjunction with the disability culture, when, as previously mentioned, I started working at only the 3rd funded student-run Disability and Deaf Culitural Center in the country (you can learn more about us here). What I did not expect to find in this new world was discrimination,  ableism and later on,  even, respect and support.

 When I first started, the instructors wanted to know something along the lines of my initial question: why would somebody who has problems moving their hands even want to learn our language? She can't succeed in this class. Ironically, though, the thing that I thought would be my greatest defeat is now actually one of my strongest communities  here . Although it is a mixed group of students (hearing, Deaf, hard of hearing), our ASL Club welcomes anyone to learn about the culture.   If you would've asked me a year ago, I never would've said that some stupid school club would have acted like a family, both within the field of study and elsewhere. This has influenced me so much so thanks to a recent lecture that I attended on the evolution of Deaf culture that I am currently considering minoring in ASL and Deaf Studies, and learning more about the intersections of the Deaf and disabled labels and marginalized oppressions.

Although we come from different histories and sources of pride, there is a lot we can do to collaborate together in our advocacy and try to bring an end to ableism and audism.

Besides all of that academic mumbo-jumbo, do you know how cool it is to know that someone understands you and supports you without ever having spoken a single word to you? It's pretty freaking cool!

   So if your question is: Is she having a seizure over there  in the corner by  herself?  the answer in my case is no,  I'm probably just practicing signing, having a conversation with myself, or someone I know.

 Yes,  my hands are very loud.  Deal with it!

 PS:  This post  was somewhat inspired by a short film that we screened this weekend about what it would be like to be the last one in a culture. This hit home in so many ways. To watch it online, go here.

The First

The first infant in the state to come home on a Broviac catheter (jugular feeding tube)

The first in my preschool class to read chapter books

The first SpEd student with physical needs in the gifted program

The first medically fragile "child" who receives specialized services to leave the state to  pursue higher education

 One of the first student  staff at only the  3rd funded disability cultural center in the country

Why am I always first?

 Being first makes it seem like I have some idea of what I'm doing. But actually, I don't. At all.

 You're such a pioneer, a trailblazer, paving the way, is all I get, more often than not. Everything I sit through and put up with is supposed to make things better for somebody else.

 Apparently I just  go through  the world radiating confidence or something, because I always get the “I wish I were you” bit. Really?  You want to stay  awake at night because  you can't when you feel like literally everyone is watching you, keeping track of you. Why is she doing this? Why is she doing that? She needs to know what the next 10 years of her life are going to entail, what  kind of help she will need, and she needs to figure it out right now!!!! You want to get so upset that you get physically sick about deadlines and phone calls that no reasonable person should ever have to make? Well then by all means, please go ahead, I could use the weight off my shoulders.

 Contrary to what some of you may be thinking, I am not always first because I want to draw attention to race, class, gender, orientation, hearing  status, ability, perceived intelligence level or anything else. I am first  because I believe that it's wrong that people can't do whatever it is  that makes them happy, and maybe because I have the balls to not let go, yet, today, at this very moment, some days. Who knows about tomorrow.  Sometimes I wish that  being first  came with a manual, a mentor, or at least a partner in crime.  I'm lucky to have  at least one of those things.  I guess somebody's got to be first, right?  So it might as well be me.  Again. For the millionth time.

Blurring the Lines

You can't, you can't, you can't

You can't

 Or can  you? Will you? Do you want to?

 But really, you need to, it will change your life!

 These are the words that have been playing in my head ever since I can remember, but especially over these last few weeks, as I have dealt with physical issues that come with the “aging” of CP.

 I always knew that it was a thing, but  it wasn't until the last year or so that I started to learn about the complexity that is the medical industrial complex.

 It's a parent's worst nightmare learning that their kid  is “defective”, will never be “normal”, will never do the things that they do. So naturally  there is a whole money-sucking industry based on  giving the child the best “quality-of-life,” making them the most “functional” so that their lives will be “better.” God, I hate those words.

 While I do not regret the choices that were made in my own best interest when I was younger, it does strike me that as said children grow older and become independent (wow, cripples  can do that?? I had no idea!),  that these choices, treatments, braces, needles, doctors, often begin to conflict with the identity  that they begin to develop for themselves as a human being. I know that this is certainly true in my case, as well as for many people I have encountered over time. They slowly, very painfully begin to accept themselves and become empowered in the way that they are. It is not always true, nor is it always easy. It is a process.

And then, there is the  “real world,”  the one that seems to revolve around two things, money (we all know what that is, you know, the stuff that grows on trees) and ableism  (the idea  that being able bodied and physically capable is the normal way of being, and that anything else is, well, wrong)

 Some people in this real world do not realize that we are still here. We will continue to be here, trying to live with the challenges and conditions that we have been given. They are not magically going to go away after some  evaluation, or writing on a piece of paper. Or are they?

 See, that's where this other thing called  money comes in. Some people realized that they could  make a lot of money if they tried to help make us better, to make it all go away.

 You ask, now why is she rambling about this for  three pages? Oh honey, that was just the background…

 My point…

So, for a person like me, it becomes all about management, of risks, benefits, spoons and many other things.

 “ You can't walk, you're not functional.”
 “You need to exercise and weight bare  or your muscles will atrophy. We can't help you here.”
 “ You need to lose weight.”
 “You should stop doing that, it's too much for your knees.”

  All   great advice, but  don't you notice a Catch-22 here? If I sit on  my ass and  do nothing, I will become older and stiffer, and that it is not a specialized skill, which therapy can help with. If I do, it's always something that I shouldn't be doing. In today's world, you can't do something just because you want to, there has to be continual progress, or it's not good enough. Although I want this progress for myself, I realize than it's impractical, it's hard, and sometimes, it sucks, but walking is probably the most rigorous workout in all my muscles  that I get, just trying to cross the room. Yes, this is my own internalized ableism and spite talking, but sometimes it feels damn good to say I can.

 But alas, it's not “progress”…

So this is where I stand today, but wait, there's more!

 “I really think you should get the pump. It will make your life so much easier if you can, you know, move your legs.”

The intrathecal Baclofen pump is something  that my family has been made aware of for at least 10 years. Basically, it pumps small doses of an anti-spasticity medicine continuously into your spinal column through an implanted device, supposedly making you more limber. I took the oral medicine many years ago and it  gave me what I affectionately like to call a “Baclofen hangover,” basically there is so much medicine in your bloodstream that it turns your brain into a zombie. This new option would seek to alleviate those symptoms. Will it make my life “better”? I don't know. All I know is that I dread the day when I can't  bend anymore to move myself in my chair, or stand up from bed. However, I also dread the day that the medicine takes away the only strength that I know and leaves me unable to do these things, like a lump  in a wheelchair. Yes, I know that the final results probably won't be this drastic, but…

 Why is she getting this medicine willingly injected into her spine in large quantities?, you ask.  She's just fine the way she is, why doesn't she just accept that?

 Sometimes, I wonder that myself. For now, the answer is to see how it will affect me. The doctors say that during this test round, I should basically be prepared to lose all the muscle function that I know. That thought in itself is scary as hell. Yes, I know the final results will be more finite, but…'

 Am I contributing to this medical industrial complex? Why yes, I am. Where is the line between making yourself “better” and accepting yourself  just for what you are? I don't know. Where is the line between autonomy and dependency, on drugs? I don't know. Where is the line between human and machine? I don't know. I live in a  shade of gray.

Welcome!

I never thought I'd see the day……

"You should write! Why don't you write??”
 “When  is that best-selling memoir of yours coming out?”
 “This needs to go viral. Like, NOW!!!”
 “ Somebody  needs to know about this!”

 Yeah, yeah, yeah. Well, here I am, on the big, bad, ugly World Wide Web, so you all can put a sock in it. Don't like it? Then I would urge you not to read any further.

  So, let's back up a little bit…

 I'm Hannah, a college sophomore  temporarily transplanted from the Last Frontier  to the Emerald City (and who knows what the future holds!) as I work on my B.A. in journalism and explore many other worlds along the way.  I have moderate to severe cerebral palsy (whatever that means), and while it does not define  me completely as a person by any means,  it has a large part in understanding who I am.

  While this will mainly be a blog about my personal ramblings and experiences, I will do my best not to complain, and to compose thoughtful responses. No guarantees, though! I will say that this is real,  in most cases  it will come straight out of my head onto the screen. I will do my best to filter myself appropriately, but it's in the blood, after all :-)

 I will attempt to write about things that matter to me and things that will be of interest to you out there in reader world. These are just things that come from living life itself,  not inherently inspirational on their own, just real, simply experience.

I write because I can,  because I need to, and because I should. I hope you'll  stay along for the ride!!

 I always welcome your feedback and suggestions! Feel free to leave comments  and please bear with me as I set up this site! Thanks!

 By the way, the pieces posted before this were written previously and I was told they should be put out there. I will be working on some original work in the coming days :-)

All because of a knife.....

All because of a knife.....

A post that I wrote as a reflection on the events of Easter

My apologies in advance, I don't mean to offend anyone currently in this situation.....

Today, I had the opportunity to go to Easter lunch at an adult group home, as my caregiver today also works there sometimes, and was invited to several parties by friends and coworkers today. I said I wouldn't mind going, so she chose this one because it was closest and most accessible. 

All the people there were really nice and really happy to have me, and the old people were great, but it was really awkward because I didn't know what to say to them. They seemed oddly content just sitting inside watching TV on a beautiful day! When we were eating, all our food was spooned out individually and nobody tried to serve themselves. I was asked at least 6 times if I needed help cutting my food. I said no and still tried to cut it with a fork, which took a bit longer but I did it. Then the other lady told my caregiver to stop helping cook and come cut my food, even though I didn't ask her to. When she said "she doesn't want that" she said "well obviously she can't do it herself, she's probably embarrassed, I would be, too!" So she brought over a knife and was going to cut my food, and I said I'll take that and promptly cut my own food (much faster) with the knife.

Then while the old people and I were visiting, my person was talking to her coworker in the corner and was explaining how I receive services and scholarship and stuff. I wasn't so much concerned about this information as the fact when my caregiver said "Ask her, she'll tell you all about it, and I looked over, ready to respond because I knew they were talking about me, her coworker said "oh no no" in a hushed voice like they weren't supposed to be talking about that in front of me, or that I wasn't supposed to know what was going on. 

I'm sorry, but I don't live in a world where I'm told when I can eat, shit, sleep and go outside, and I'm going to work very fucking hard to keep it that way. I may need some help with some of those things but that is directed by me, not you. And no, of course you just didn't tell a resident that she can't take a nap because you don't feel like helping her back up, and when she said "That's ok, I'll do it myself" she was not "allowed" to do that. 

Being here today really made me miss my great grandma and auntie, both of whom passed within months of being in a facility. They are (still) two of the most stubborn mules I know and would not put up with any of this shit. Great Betty said it was like prison, after living in her own home for almost 93 years, and Anne ran away from the facility after losing a lot of her decision making skills from a stage 4 brain tumor, but she was adamant that she would die in her own home, under her control. She was the one who taught me how to advocate for myself, and is still one of the most badass people I know. I sincerely have no problem calling her my hero. I know some of you have had to deal with this out of necessity and I suppose you get used to it, but I support you in solidarity of making change for a community based system so that we can take control of our lives. These people may be old and forgetful, but they ain't stupid! Breaks my heart! Miss you guys so much ♥ ♥ Just writing this brings tears to my eyes. RIP ♥ 

Waiting

The following is a post I wrote in reflection of a recent series of events. I shall call it........


Waiting

I opened my eyes, rolled over, and groped for my phone. I looked at the clock. It was 10 o'clock, help was supposed to be here an hour ago. No calls, texts, no nothing. I called the administration, and some people I know, and started the process. Of waiting. Administration can't get ahold of this person, and calls another one, that is an hour and a half away. I'm still waiting. I called the RAs, but they are not on duty anymore. I'm still waiting. Grandma says: call the newspaper, the media. This is when I wish I could get through to the Seattle Times tip line. The administration knows that I am very angry, and they are very frustrated as well. 50 mins later, there is a knock on my door. She is here, but she can't get in. The phones are not answering, so I tell her to go down and knock on the RA's door. Thankfully, he is of some use to me today. They are gone for a while, at which point I called across the street to find that he has gotten the keys. She is here, a whole 2 hours and 15 min. later. I can get up now.

This should not be the cost that anyone has to pay for their own autonomy and self-determination. This is unacceptable so much so to the point that I'm trying to rethink my assistance strategies with the limited options that I have, due to a recent series of events. I don't know when anything will change, I have spoken to people about this, and I don't want to deal with the system anymore. I'm trying to find a balance between help that I can control, and help that I can't, but it is a very complicated situation. Friends can only do what they can do.

I find it extremely ironic that the only guarantee of consistency is a place where you're told what to do and when to do it. I cannot and will not bring myself to that place. I'm not so sure it would even be better anywhere else, but I am not willing to give that up. Autonomy, self determination, respect, and a little bit of dignity are some of the most important and basic rights on this Earth, and should be valued as such. I tend not to rant publicly about this stuff, but I want people to know that this is not okay. People should be able to choose who helps them, and when and how they would like to be helped, and be able to expect someone to show up on time at the very least. I know I'm such an idealist, and so demanding, but people need to know how important it is for others to be able to control their own lives, however they choose. People like me should not have to think about giving that up in order to receive a sense of normalcy–“normalcy ”, what is that anyway?

I'm putting this out there, because you need to know. If I have talked to you today, or lately, and seemed a little short or upset, it's because I am. It's not your fault, I just ran out of steam.

This has been my PSA for the day. Now if you'll excuse me, I need to go get some sunshine, outside, alone, before my head explodes and I need a squeagie to clean it up! Love you all!