It's All About Intentionality--Hurtful Words Part 2

Part 1

The second time I took psyc 403 [child psychology], my adjunct professor (a full time school psychologist who adopted a son years ago who has significant psychological disabilities) started in on how Drs are keeping premature babies alive earlier and earlier. In doing so they are taking advantage of parent's vulnerability, he says, for their own personal professional gain (so that they can publish the case study) and NOT looking out for the best interest of the child. He also believes that if there becomes prenatal testing for psychiatric disabilities it should become the norm to perform preimplantation genetic diagnosis. Society would be saving those babies from a life of constant suffering, not just physically, but because of how pervasive ableism (he didn't use that word) is in this society. Forget about working to change society, just kill off those people. Reintroduce eugenics [my interpretation, not his wording].

I was sitting in my chair in class that day... Offensive language can come in many forms and this is much more hurtful to me then calling me a cripple, invalid, spaz, retard, a wheelchair (what, am I not a person?).

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I am apparently having significant difficulty devising coping mechanisms for my psychiatric issues that are age appropriate. Coloring in class is not ok, but doodling on paper with a pen is ok. It's stupid I know, and I've bitched about it as recently as a week and a half ago when a friend said to me

"It's all about intentionally. If you come to class with markers it's obvious that your intention is to color, but if you come to class with a pen and a few extra pieces of paper, your intention is to take notes. There's a fine line and it's stupid."

My email the next day (quoted above), coupled with her words, gave me a lightbulb moment. This is the best way to explain how words can be both hurtful and empowering. It's the intentionality behind them.

As a non-disability example, the year before I transferred the students in the GLBTQ club on campus voted to change their name to the Queer Student Union. I don't know what it was before. There was apparently a lot of backlash from that decision and the university almost banned the name change.

My personal examples are that I love referring to myself as a crip and a spaz, will say things like "I have a few screws loose in my head, but that's ok because I have a spare one stored in my ankle (surgery) in case one falls out" and something like "I was crazy busy--wait, I'm crazy all the time." Recently my mom called me "a nut." My reply? "We already knew I was certifiably nuts." Therese agrees (also read the description of that one and look @ 1:14 of this one first).

If someone implies that my life is less valuable or I'm out and about and hear someone call someone a spaz as a put down I get an instant pit in my stomach. I try hard to explain to people why using the r-word is just as hurtful as calling someone the n-word or saying "that's so gay." "I'm not calling a person a r----d, I'm calling a thing r----ed," I get often. It doesn't matter. "that's so gay" is often used to describe a thing, not a person, but somehow people have been educated that this is not ok.

Using words in their original intentionality does not have a hurtful sting. But it's gotten to the point where people don't even know what it is, so they can't use them this way. Spaz comes from spastic cerebral palsy, my official diagnosis since the age of one. Mental retardation (now intellectual disability) used to be a pure medical diagnosis before it became a put down. Before that people were referred to as feeble-minded. Gay used to mean happy. It's just that these words are no longer used with their original intentionality, things might be fine if they were.

Therese says that "angles can fly because they take themselves lightly." I think that my use of seemingly derogatory words (with their original intentionality) demonstrates that I am comfortable with who I am. The start of my use of these words coincided with the beginning of my journey to finally accept the impact of my limitations in their entirety. That is a GOOD thing. I must take myself lightly. My very survival depends on it. I might possibly be the most happy I have ever been and my use of these words definitely had a positive impact on this, as odd as that may sound. Using these words signifies that I've taken ownership of who I am and instead of slinking away because I internalize stigma. I have taken ownership of the hurt and turned it around to use as a source of empowerment. I am a PROUD crip.

My intentionality behind frequently using "hurtful" words in everyday conversation is to illustrate my light-heartedness, my comfortableness, that my disabilities are no big deal to me. That's so different.

On "Security Blankets"

I am not doing ok right at this exact moment. I am doing ok in general, in fact I am doing GREAT, just not RIGHT NOW at 4:53pm on Feb 16, 2010. Ask me at 6:53. I am what I call "buzzed" or "half manic" as I termed it Friday to laughing bipolar friends (what's wrong with that?). No, I am not hypo-manic, trust me, I know what that feels like. This is "medicated." I might be worried about becoming hypo-manic if I didn't know exactly what this is from, if I didn't know that I really could feel fine at 6:53, but I do.

My brain is just a little over keyed up and instead of allowing me to be mellow, to crawl into bed with my Grey's Anatomy DVDs that I've watched so many times I can now recite lines of several episodes in advance, my brain is insisting that I do something, that I go for a run (which I cannot do as I had to abandon my chair at school, but that's another story), that I at least walk around to burn off this energy, that watch more of Therese Borchard's vlogs (video blogs), and that I post about them. What can I do but oblige? Ignoring this state will only make me irritable. So I have put on music, started writing and I am happy to report that I am already getting my brain back in order. The person who gave me a caffeinated diet coke 3hrs ago should consider buying decaf. I know 100% it's the culprit.

says you: What does this have to do with security blankets?

says me: Nothing and something. You will see the connection below, but I also write more when my brain is like this, wanted to keep a written record of my state of mind, and thought some people might like to know more about how BP is for me. Sometimes it's ok to mix caffeine with my meds, other times it is NOT.

So onto security blankets. You know, not actual blankets, but the concept. I've been wearing mine all day, I've been thinking about them all day, and then I happened upon Therese's vlog and decided I should write about this now as opposed to when I cover her anxiety vlog. To me a security item is not something that envelopes you and gives you comfort, but an anchor as weight watchers likes to call it. Something that steadies you when you are unsteady, straightens out your brain when it is crooked (like now, see, it all connects).

I have different anchors for different mood states or situations. Sometimes I need my stuffed clydesdale if I do need comforting / tactile sensory input, sometimes I need fast music if my brain is jumpy / too fast (like right now) and requires auditory sensory input, and sometimes I need an ADAPT t-shirt and/or an orange shirt and/or my "ugly orange hat" (like today).

I've never been able to explain the fast music thing until now. I just realized what I am doing, and it is GENIUS. Wouldn't slow music be more calming, you're thinking? Nope. I think my brain calms down because I am in a sense turning over my hypo-manic / half manic state and/or anxiety to an outside force in a sense. I am letting go of it; responding to it proactively as opposed to reactively; acknowledging both that the feelings / state is there and that they don't belong in my brain as I'm supposed to be balanced, but that this is still a part of me that isn't going away. So I upload it to another server in a sense (if you understand computer language), my ipod, and free up gigabytes in my brain that could be better used for something else. See? GENIUS!

What I thought I would be talking about in this post before it became all over the place (like my brain) were my ADAPT t-shirts. I am wearing one right now over my long sleeve orange shirt under a zipper hoodie (FYI, the GAP has been carrying tons of styles of shirts, sweaters, and hoodies in exact CCA orange!), was wearing the same shirts to the budget hearings yesterday (I made sure not to sleep in them), and will be wearing a different one tomorrow, even though it is 30 degrees out. I have 6.

The simple act of wearing a t-shirt makes me feel like I can conquer the world! The simple act of wearing a t-shirt makes me feel like a competent, confident, POWERFUL, successful person, which I very often do not. In certain situations it actually positively changes people's reactions / perceptions of me. ADAPT shirts help me focus on the things that I am good at instead of my many failures. They remind me that I am part of a greater force then myself alone, that I make a difference, that I am just as important as anyone else, and that the world, ADAPT as an organization, is better off because I am me, I am passionate, and I am there. That is true for every ADAPTer. Even just the color orange (the unofficial official color of ADAPT) helps my confidence greatly, often to the point where I can easily push my anxieties aside and charge through a stressful situation knowing that I will come out on the other side in one piece. If I have to rotate my shirts and wear them every single day that I am in class, I will. You cannot control me; you do not actually, really, hold my fate in your hands. I do. And I will not allow you to posses my power anymore.

My "Hard Times" Song

This week's edition of the disability blog carnival (to be published Thursday) will be hosted by Shiloh over at Sunny Dreamer. The theme is "favorite texts for hard times (songs, poems, scriptures, quotes, ...). This blog carnival theme was pretty easy for me. Quite possibly the easiest carnival to write on. I've only listened to my "hard times song" a thousand times in the last year, and probably hundreds of times last fall alone.

Every few months I get sick of all of the songs on my Ipod (all 1888 of them) and MUST purchase a new CD through Itunes. Last Sept (07) my purchase was the Grey's Anatomy season 3 CD. My former roommates got me completely addicted to the show, and anyone who watches knows how absolutely awesome the background music is. At the time I was looking for something upbeat and fast to match my mania and calm my workshop anxiety. The fact that most (if not all) of the songs are indie/not well known appealed to me as well. What I found though, more then 2 great fast upbeat songs and other interesting mid-tempo songs, was a great slow song. My "hard times song" is Keep Breathing by Ingrid Michaelson (see you tube video and lyrics below). I don't love the scenes from Grey's, I find them rather distracting, but she apparently hasn't produced a music video for the song.

The storm is coming but I don't mind
People are dying, I close my blinds
All that I know is I'm breathing now
I want to change the world
Instead I sleep
I want to believe in more than you and me
But all that I know is I'm breathing
All I can do is keep breathing
All we can do is keep breathing now
All that I know is I'm breathing
All I can do is keep breathing.
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing now

I would like to write some deep dark long winded post about how this song connects to me and what it means to me, but I just can't do it. The fact of the matter is that the connection is just too obvious. Right after the workshop was over I went into a severe depression and couldn't get out of bed.

"I want to change the world/ Instead I sleep/ I want to believe in more than you and me/ But all that I know is I'm breathing/ All I can do is keep breathing"

What's more obvious then that? All I was doing at the time was sleeping, and anyone who knows me in real life can tell you how much I want to change the world. I want to work with 'crip kids' as a 'child empowerment specialist' (anyone who's going, 'what the heck is that?' I completely made it up, and will not reveal what the job will entail. You'll steal my fantastic idea...) I played the song over and over and sometimes it was the only thing that kept/stopped me from crying. "All I [could] do was keep breathing."

So that's my "hard times song." Even last week I was having a bad day and crawled into bed with my Ipod and played the song over and over. Sometimes all you can do is breathe, and that's ok. Eventually you'll change the world.

What's your hard times text?

My Blog is Group Therapy

Your Blog Can Be Group Therapy

http://www.cnn.com/2008/LIVING/personal/05/07/blog.therapy/index.html

I got to this article randomly last night through a combination of allpost & the Disability Blog Carnival --which I am hosting right here in just over a month. Topic chosen, but under lock and key... Thought I would torture people with that tease of a shameless plug. You know 6 degrees of separation? This article took exactly 6 clicks to get to. It's from May. Here are some excerpts:

"A 2005 survey by Digital Marketing Services for AOL.com a found nearly half of the 600 people polled derived therapeutic benefits from personal blogging...

"Writing long has been considered a therapeutic outlet for people facing problems... But it's the public nature of blogs that creates the sense of support. Reading someone else's blog can be surprisingly beneficial, says MightyGirl.net blogger Margaret Mason... 'Blogging can create an instant support system, especially at a time when you might not have the energy or resources to seek out people who've shared your experiences...'

"John Suler, a psychology professor at Rider University in New Jersey, [says] 'going public with one's thoughts and experiences can be a self-affirming process.' He and other experts say blogging shouldn't replace face-to-face counseling -- although it can complement sessions when a patient shares their writing with the therapist... 'It's a form of group therapy,' says Leah [a social worker and writer of EveryoneNeedsTherapy.blogspot.com]. 'Not only can you express your feelings, but you can get comments, and that creates a dialogue.'"

My Blog is Group Therapy. Is Yours?

I wasn't intending to go out and find this article. In fact I wasn't intending to go out and find anything. It just so happens that I stumbled across a gem in only 6 clicks. It says what I can't always say to people--the people who think someone is going to come after me with an axe, or the people who read this on facebook and find a big problem with the fact that I focus on only one subject. To those people I want to say, HELLO!!!! This blog is hosted on www.disaboom.com . What else is it going to be about? If I had intended to cover a wider scope, I would have hosted on blogger, typepad, or wordpress.

Those people, and other people I know in real life who do not read this blog, have some huge problem with the fact that over the last year and a half, more and more of my focus has been on disability. Well, to give a very simple answer to their seemingly simple, but actually very complex question of why, because I'm 23, THAT'S WHY.

They think my focus is on disability because I seem to have this need to draw attention to my differences and use them to my advantage. Correct me if you're reading this and I've got you wrong. Truth is, the more I immerse myself in disability, the more I DON'T want to do that anymore.

Really, seriously, this is all just simply because I am 23. Aren't co-eds supposed to be liberal go-getter tree-huggers who go attacking companies for using animal testing, or take a strong stand (either liberal or conservative) on the war, abortion, or gun control, or a plethora or other hot button topics? I've only gotten so deep into disability to fulfill my natural duty as a red-blooded 23 y.o. American co-ed. I don't have any ulterior motive. Unless having a strong need to educate people, help people live more independently, etc is an ulterior motive that is. Look,

I HEART CRIPPLES, AND I AM VERY PROUD TO BE A CARD CARRYING SPAZ.

OK???

[picture description: Timmy & Jimmy, from the Krazy Kripples episode of Southpark]

It was roughly a year ago that I stumbled across BADD 2007 in trying to research ableism. And then I forgot about it and found it again in Sept. And I hermited (is that a word?) myself in my room for 3 or 4 days and just read blogs, mostly BADD postings, under the guise of 'I have to. There might be something good in here for the workshop.' At some point I came across DBC and read some of those too. And I liked what I read.

It didn't take long for me to realize that I needed the disability blogsphere to play a part in my life. Partially because I can only stand to hear so much worry from people who think the focus of my life is misguided. Mostly because I haven't found a single disability blogger who is in the closet. If you're "disaphobic" you won't be hanging with us cool gimps (or our allies, I'm cool with anyone who's cool with us).

After spending my early years trying unsuccessfully to pass, my tween years feeling dejected because there is just no way a spaz (even a mostly walking spaz) can ever pass, and my teen years just lost (because if I couldn't pass, now what?) it was nice to come across people who seemed to have a very solid sense of who they are. And who they are is a crip. If you can't hide it, embrace it. I'm not saying that being a crip is all roses, you all know that, but it is rather freeing to be comfortable in your own skin (or at least start to be). The more I blog the more I seem to be OK with who I am. Because you all seem to be OK with who you are.

[picture description: DISABLED & PROUD]

People are still going to find it hard to understand how I could feel a close commoradery with a bunch of people I'll likely never meet. I'm not sure I could ever really explain that to someone. For those of you reading through facebook or a random google search, maybe this will help. When anyone finally becomes out and proud, or starts on that journey to become so, there is just this innate magnetic attraction towards others like you. Especially when you've always been different. When we can crack jokes about wheelchairs and artificial limbs, we're finally on the inside instead of off on the side just watching-- watching all the other kids play soccer or learn to drive or get to "second base." It always feels nice to be part of the incrowd.

With disability, this is harder to achieve because we are still being encouraged to pass as much as possible, even by people who are well-meaning and seem to "get it". We're also still being denied the right to claim ourselves as a minority and a culture. So there are just less of us who are out. Personally, I prefer the uppity intellectual crip, so that limits connections even further for me. The club is even smaller.

So then, well, I don't drive, for example. Fictitious person John, a quadriplegic, who does drive, can't get into fictitious person Suzie's house (say she has aspergers) because there are stairs to the front door. But if I could only get to Suzie's house, I could get in, because those stairs have a railing. OY!!!

Blogging just works for us uppity intellectual crips. Blogging works for me. Blogging is 100% barrier free. Bloggers need not be able to walk, talk, hear (it's 99% text, except for stupid embedded, uncaptioned youtube videos), type (voice recognition software), or even see the screen (that's what screen readers are for).

[picture description: stairs with a red circle/slash and the words barrier removal team]

"Blogging can create an instant support system, especially at a time when you might not have the energy or resources to seek out people who've shared your experiences." To Margaret Mason: YOU GO GIRL!!! The woman summed up this whole long post in one sentence.

Some Meanderings About BADD & a BADD 2008 Disaboom Directory

I recieve tremendous support from everyone I'm around on a daily basis. 8 out of the 10 full time professors in my dept have either extensively worked w/PWDs, done peer reviewed research about PWDs, and/or have at least 1 PWD in either their family of origin or procreation (even if it is something "nontraditional" like cancer). Chances are that the other 2 do too and I just don't know about it. When I need an accomodation, I get it, no questions asked. When I don't know what it is that I need, they are the ones who initiate figuring out what it might be. They're pretty good at it (even if I'd rather not listen to what it is they came up with).

All of my close friends are multiply disabled as I am, and are either finishing up their undergrad degrees, in their first year of grad school, or are in their first year working post-masters degree. Last night I had a conversation with one friend about our sensory stim needs and talked with another about voice intonation and some such thing. Sometimes I have conversations with friends about medications. A friend with CP decided to stop at target on her way home from work yesterday. She also decided to walk home from there. It's a 2 sec car ride but it took her 40mins on foot. It would probably take me 30mins. She had a heavy backpack with her in addition to what she went there to buy (was she crazy???). I know EXACTLY how she felt when she walked in the door. The only way you know what that kind of exhaustion feels like is to experiance it yourself. It's not something that can be explained. I surely can emphasize with her. I know exactly why she did it without ever having to ask. If it was me I would have done the exact same crazy thing in a heartbeat, knowing fully well just how crazy it was.

It's a wonderful feeling to be in an environment where everyone "gets" me. I say "gets" because no one gets me entirely. Yesterday was the 3rd annual Blogging Against Disablism Day hosted at Diary of a Goldfish. Stumbling upon last year's BADD inspired me to start this blog. Reading BADD posts lights a fire within me. It provides me with a level of comfort that I'm not sure I can clearly articulate in words. Sometimes I feel more connected to those in the blogsphere then anyone else. My friends and professors are not activists. Fighting the good fight is on a whole other plane then just having first hand experiance with/as a PWDs. I have such a strong driving force behind me, and knowing that so many of you do too is what brings me that comfort. I always know that I'm not alone, but it never hurts to have that reinforced.

The official BADD directory is long and very extensive. I hope to read through every post and comment here about my favorites, but it's the end of the semester, so that isn't going to happen anytime soon. What I thought I'd do is link other disaboomer's posts below so that they are all in one spot and don't get lost in the shuffle. If you're a disaboomer and posted on your offsite blog, please comment. I'd still like to link you.

In alphabetical order:

Attila the Mom (on her offsite blog): Little Pitchers Have Big Ears
CherylBeryl (the official post): Focus on Your Needs: BADD 2008
CherylBeryl (the unofficial post): Tiny Tims & Supercrips
Nightengale: Anyone Else Doing Blogging Against Disablism Day?
Veralidaine: Why Disablism is Your Problem, My Problem, and Everyone's Problem
Vicki (a slightly late post): 5 Ways the Internet is Important to Me

Happy reading!