Friday, January 30, 2015

Good Vibes Award goes to...ME!

Today has been one of those days, I got SUPER EXCITING THRILLING NEWS this AM, which I will share soon [Tangent: No, I'm not engaged, pregnant or considering sex change surgery...so that will narrow it down considerably for you.], and then I found out I was gonna be carless for about 5 days because my robot of a mini van likes to be intensely complicated and cost be hundreds and hundreds of dollars. I kinda went from this...

to this...


Thankfully, the deafening sound of money being siphoned from my bank account was suspended for a moment because I got a message from Adi, the lovely lady behind the blog Vegetarian Courtesy, saying that she had nominated me for a "Blogger with Good Vibes" award. [Tangent: Let's call a spade a spade. These things are like the blogger equivalent of a chain letter, but they are a fun prompt and a great way to recognize other blogs that you follow/support.] I very much enjoy her blog, and despite the fact that I started my morning with a sausage crunch wrap from Taco Bell, I am glad Adi doesn't judge me too hard on my enthusiastic carnivorousness.

The requirements of every winner is:
- Respond the 19 questions stated below.
- Nominate 10 other blogs...I did more...but oh well
- Advise them that they've been nominated.

19 questions that Vegetarian Courtesy asked me:

1. When did you begin blogging?
July, 4 2010...I had a massive head cold and was stuck inside and needed something to funnel my Robotussin infused delirium into

2. Why did you decide to start blogging?
At the time, I was working a job processing insurance providers. I wasn't particularly happy then and felt very stifled, I needed a creative outlet so I could say I was doing something I loved.

3. What does your blog teach us?
Most days, probably nothing. Sometimes people tell me they don't know anyone with a disability in real life, so my blog has given them a new perspective they never thought about on some things. So I guess that's something...even though it is unintentional.

4. Did it cost you some time to name the blog?
Kind of. I really like the word "pith" so I remember my original idea was "pith and vinegar" or "gettin pithy" but my sister informed me that when telling people the name, I might just sound lispy. In retrospect, it was good advice. I like that my blog title isn't trying to be clever....it just kinda states the obvious.

5. Is your blog design autodidact or contracted?
Autodidact! I guess I am way too much of a control freak to contract stuff out.. I am real weird with sponsored posts and I will only do them if they are something I love and they will give me something to share with you guys. 

6. How often do you publish a post?
I wish I had a definitive schedule. I really don't. I blog when I feel the need.

7. Do you have solid days where you publish or do you do it whenever you feel like doing it?
See above. Now that I write for work and do social media at work, sometimes it's a little more infrequent, but I think the quality is still there. I HOPE!

8. Do you share your publications on other social media sites so people can recognize you?
Duh.

9. If so, what are the social media sites we can find you on?
Twitter: @kimmiejonesin (mostly for live tweeting awards shows etc)
Instagram: @kimmiejonesin
Facebook: /ThatGirlInTheWheelchair

1O. Do you have different sections of your blog?
Yes and No. I probably should organize it better. I have different tabs along the top and there are key words in the right hand column to give you an idea about some of my topic proclivities.

11. What would you recommend to us on your blog?
Ooooh. No idea. I think the posts I hear the most feedback on are my monthly Netflix documentary posts and my annual sexy Halloween costume posts. Maybe because they are my only real consistent features.

12. How much time from your day do you dedicate to blogging?
Depends on the day. I think about it even if I am not actively blogging, I am reading them.

13. Do you think you're capable of shelving the virtual life right now?
Nah. Blogging has quite literally changed my life. I think about it sometimes, but I like it too much.

14. What positive things has blogging brought to you?
It has introduced me to awesome new people and given me several exciting opportunities to write. It has given me confidence and acted as a kind of therapy and even allowed my boyfriend to get to know me online before we ever really knew each other well in real life.

15. And negatives?
I have no filter, and sometimes that bites me in the ass. People are not always too keen on what I have to say, but the majority of the time they respect my honesty. I also hate writer's block and seeing all my typos. I'm the worst proofreader ever.

16. What is the first thing you look for when visiting a new blog?
A point of view. When I read a blog, I like to know that there is a real person there and not just superficial stuff. I like blogs that aren't cookie cutter and that seem genuine.

17. Would you like the blogs that you visit daily since a long time ago become businesses?
Blogs are a great gateway to starting a business. A lot of the bloggers I follow are illustrators or designers and I enjoy seeing their work and getting to know them along the way.

18. Would you like your blog to be the way you win your life?
Um...not sure what that means. I hope I have bigger things to give humanity than this lil old blog, but I guess it's a good jumping off point.

19. Does it bother you to not receive any visits?
Not anymore. It used to drive me crazy when I worked really hard on something and it go no traffic, but I try not to pay too much attention to numbers anymore.

My nominees for the prize are:

Say it Ain't So
Wacky Tacky
Wordy, Nerdy, Thirty-ish
What Do You Do Dear? 
Lladybird
Old Red Boots
Kittycat Stevens 
Adventures in Aubreyland
Spashionista 
Boo Bobby
Junebugs and Georgia Peaches
In Case of Fire, Use Stairs
Let's Go Ride A Bike
Viva Bang Bang
Clueless Girl's Guide
My Pretty Baby Cried She Was a Bird
Librarian Tells All

Ok, this is an awkward end...here's more Milouse gifs representing my inner feelings.
 

Thursday, January 29, 2015

The Theory of Everything Did Everything They Needed to Do...Here's Why

Awards season is rushing in, and this year I am way ahead of the current and have seen all but one best picture nominee. [Tangent: The trailer for American Sniper gave me a mini panic attack, so I have yet to take that plunge. I have to mentally prepare to be made to feel like an emotional garbage fire inside....it's the same reason that I saved 12 Years a Slave for last in 2014.] For the most part I have enjoyed all of them, [Tangent: Even though I am a little miffed Gone Girl and Nightcrawler didn't get more attention, because both of those movies were fantastic.] but there are always controversies...and one that I read about last week involving disability really burns my biscuits. [Can I make a credible counterpoint using "burned my biscuits"? Well...I'll try.]

I posted this link about  Eddie Redmayne and his "disappointing depiction of disability" a couple days back on my blog's Facebook page with the sentiment that I disagree 100%. However, I really felt like I could write scrolls on this topic...or at least a blog.

 OK. Let me start off with how I feel about this thesis statement from  the article:

"James Marsh’s movie exists for two purposes: to make able-bodied people feel good about themselves and to win Oscars. "
Here's what I, a woman with a disability,  know about The Theory of Everything. It's a movie I had wanted to see since the trailer came out, and after seeing it and inevitably crying profusely, my boyfriend I left the theater in awe because the nail was hit on the head pretty squarely. [Tangent: That trach scene hit me right in the stomach and induced some  snot crying.] It was a beautiful and honest depiction of what it is like to live with a progressive disease and adapt to new unexpected challenging as well as be someone in love with that person. Did I once say, "No they should have gotten an actor with ALS to play Hawking!" ABSOLUTELY NOT!


Finding an actor at the beginning of his diagnosis with ALS and following him through that huge life transition whilst factoring in the rigors of filming and his ability to emote accordingly...I feel like that is possibly the most impractical request you could make to a casting director. There's a market for that...it's called documentary and I have seen some great ones [Tangent: Get on Netflix and watch Hawking or So Much, So Fast.] . True, I am not an actress. I do not know what it's like to go out for roles of a person with a disability and then lose them to an able-bodied actor.  [Tangent: If you want that perspective, check out this article. ] However, I guarantee you if I was and was up against Eddie Redmayne...I would be A-OK with him getting the job, because his performance was brilliant.

Do I think people that don't have disabilities were leaving the theater saying "DAMN! Sucks for that guy!" No. Well, I mean maybe, but it kinda does...and if that's how they feel...that's OK.  It's OK to see the true story of someone else's life and struggles and feel a renewed sense of self and understanding of others. [Tangent: For example, when I saw The Imitation Game, I cried because his life was a struggle that I can't wrap my head around. It's one that I will never understand firsthand. Never once was I pissed because Benedict Cumberbatch wasn't gay. It's called acting, ya'll!]

Was I butt hurt that the movie also used his wife's perspective quite a bit and how she felt about his disease? NO! That was probably the most realistic element...probably because it came from her autobiography. It wasn't as if this information was all fabricated and pulled from the ether. Additionally, the Hawking family cooperated and signed off on the movie and casting and worked with Eddie Redmayne and Felicity Jones one-on-one, so why are people getting so damned offended. I have seen commentary likening it to a minstrel show, and find that a little unfair because the movie was extremely respectful.

see...everyone is cool with it!

 We all know that I am a pretty laid back person on these matters and don't like to get all up in arms about little nitpicky things [Tangent: Remember I was the minority who thought the hired disability escorts at Disney World weren't offensive, but were rather an interesting employment opportunity. Seriously, perspective, ya'll! So many bigger fish to fry. Let's chat accessibility and then you can start theoretically stripping people of their entertainment awards once that beast has been slayed.] , so I guess I assume most adults with disabilities feel the same. WRONG. A lot of them are mad as hell about it. I have seen several references calling this kind of thing "cripface" or that it was somehow wrong that a disabled filmmaker didn't step up to produce or be involved in the film. This is so sublimely irritating to me. These people showed up to tell the story, that clearly no one in the disabled community was telling...so why are you mad!??!?!? 

The Slate article points a very angry finger at the ending where this brief sequence occurs:
"There is a scene in The Theory of Everything in which Stephen Hawking sits on a stage. He is almost immobile in his wheelchair; Eddie Redmayne, the actor playing him, is at the bottom of his descent into disability. Hawking sees a woman in his audience drop her pen, and the film shifts into a fantasy sequence: Redmayne rises from the wheelchair, straightens the limbs he’s been twisting and twitching in his portrayal of Hawking, and walks over to pick up the pen. He hands it to the woman, smiling flirtatiously, suddenly free of his disability and once again a handsome movie star. Then he returns to the wheelchair and resumes his imitation of the effects of ALS, and the film’s action continues."
For this scene, frankly, I could either take it or leave it. On one hand, it did take me out of the movie a bit. [Tangent: It did remind me a bit of when I used to watch Glee and they gave Artie, the kid in the wheelchair, a dance sequence in his dreams.] I had a moment of "What the hell is happening!?!?", but then I understood the profound subtext. That simple moment portrayed the  times anyone who lives with adverse circumstances catches a glimpse of ways his life may have been different. It's such a simple moment and a peek into how Hawking would be if the chair stripped away. So many times people are distracted by disability, and that moment seemed like a moment of humanity, which kept my eyes from rolling too hard.


What did you guys think? I bet this whole controversy never even crossed your mind, right? 

Friday, January 23, 2015

Netflix Documentary Hits and Misses Vol. 6 (January 2015)

Everybody. Yeaaaah. Watchin' Netflix. Yeaaaah. 
Everybody watch those docs tonight. Kimmie's back. ALRIGHT!

OK. That was weird and lame and inexcusable and let's never speak of it again, deal? I can only guess that delirium is setting in from binge watching too much lately. [Tangent: As if I didn't have enough entertainment to keep me satiated, I recently added Amazon Prime to my repetoire and thus have been spending each available minute watching Six Feet Under because I am always at least 10 years late to trends. Just call me your Aunt Linda, who just joined Facebook.]

So it's January and a new year brings a new crop of docs. [Tangent:..and some old ones that I have just come across because the Netflix algorythms finally deciphered that I wasn't a gay male. Oh well, it was fun while it lasted. ] This month was varied to say the least and I love that several of them were recommendations from friends and family members. Appreciate cha! [Tangent: Please keep them coming. I have a document in my phone specifically for all these recommendations.] I also bit off more than I can chew and have about 4 other ones halfway done, but I will get those in February!
 

Andrew Jenks, Room 335- A+
I love this movie. So much so that I wanted to watch it again with someone immediately so I could share in their delight. The movie is about a young 19-year-old filmmaker who on his summer break from school moves into a nursing home to live among the population. It gave me hope to see someone so young create something that was not only watchable but not cloying and full of genuine emotion. [Tangent: See, people under 25 aren't all garbage! There are exceptions.] These men and women kind of adopted Andrew and he formed genuine friendships with people that were quadruple his age. It wasn't only well done for a pack of teens; it was well done. period. Also, if you don't want Tammy to come live in your pocket....you have no soul!

Becoming Chaz- B
This sucker has been staring me in the face every time I log into Netflix. It seemed to be in every possible queue for a long time, so I finally gave in and added it to my watch list, where it has languished for about a year. It under an hour and a half!?!? Why haven't I taken the plunge? Maybe the low star rating, maybe because after seeing him in interviews, I didn't feel like I don't really find Chaz Bono that interesting/likeable. [Tangent: And not because of her gender/sexual identity, more because I just found him smug.] Well, I finally checked it out and found it to be much better than expected. I found his story pretty powerful and the support of his loved ones very refreshing. In case the name isn't top of mind familiar, Chaz Bono (formerly Chastity Bono) is the daughter of Sonny and Cher, who in the last several years has been a major spokesperson for the transgendered community. This doc chronicles her transition from Male to Female. The parts I liked most were the interviews with family who remember his childhood and early signs that he was living in the wrong body.

Playground- A
Why I chose to battle insomnia with a movie about human trafficking? This only draws attention to my poor decision making when sleep deprived. This movie goes in depth into the issue of child sex trafficking...only unlike so many news stories the investigate the issue in Asia or overseas, this story talks about it domestically. Through interviews, true profiles, statistics, investigation and weird eerie cartoons- they tackle this issue, that I naively didn't realize was so prevalent in the US. [Tangent: The investigation into the cold case of a missing girl by the documentary filmmaker, to me, had a very Serial vibe to it, if that's your sort of thing.] This is happening to teens and children from all class levels, not just runaways and despite their parents involvement, their efforts seem futile. Well, needless to say it gave me strange disturbing dreams for a few nights in a row...but gave me some perspective and things to think about.

Blackfish- A
OK. To be honest, I saw this about a year ago...but it's still one I talk about a lot and would absolutely recommend. It is basically about the dirty secrets that hide behind orcas in sea parks and their practice of sweeping under the rug the numerous attacks on trainers. True, it is completely one-sided, but it is extremely persuasive and does a good job of mixing interviews and emotion with inarguable facts. [Tangent: I am always leery of being one of those people that bases their whole ideal system on what one biased documentary tells them, because that kind of thing has reached epidemic proportions. However, this one made me never want to go to SeaWorld.] These trainers are just college kids with very little training, and you kind of feel bad for them. Fair warning, there is a sequence where they show a trainer extracting whale semen from the aggressive papa of legions of killer whales...and no matter your level of maturity,  it is something you can't unsee.
Elaine Stritch: Shoot Me- A-
This movie reminded me a lot of the Joan Rivers doc that I watched in October, because it featured another sassy legend in her 80s that wlll make you feel completely lazy sack of trash in comparison. She is a spitfire. AT one point a friend calls her a molatav cocktail, and I couldn't agree more. [Tangent: To be honest, I was completely ignorant of her body of work. I knew her only really as Jack's mom on 30 Rock.] She is over the top and brash and for some inexplicable reason only wears oversized white shirts and no pants, but it's all so deliciously kooky. Even though at times she coudl be a little bit harsh, you'll fall in love and maybe cry. [Tangent: I found this doc on this buzzfeed list of movies you probably missed in 2014, and am gonna try to tick off many of the others.] 

Legends of Knight- B+
As soon as this one popped up in my suggestions, I promptly saved it for future watching with Jamie, the Batman enthusiast that I call mine. The movie follows several seemingly normal people, who in some way have been inspired by the actions of Batman. [Full disclosure, I started watching this intending to laugh intermittently at weirdos, because I thought it was gonna be like other superhero wannabe docs like Confessions over a Superhero (the one about the semi-racist Superman impersonator/superfan) or The Reenactors (the doc about the Hollywood Boulevard costumed characters). Although I highly recommend both, I would call them more or less enjoyable trainwrecks.] The stories chronicled in this film ranged from a child with cancer to a cop to a teen from Petaloma, CA who roams his hometown via razor scooter, keeping vigil. All of them really touched me, and I kind of came to understand the allure of Batman. He is just a normal guy, with no supernatural intervention unless you count a bad ass vehicle, who wants justice. His kind of heroism seems attainable. Jamie still argues that he likes Batman for the villains...so not as inspiring.

Darius Goes West- A-
Being that this is about a teen with MD, I have known about it for a long time, and been itching to see it. [Tangent: Learning time- Darius has Duchenne MD, which is one of the 40 types of neuromuscular diseases that fall under the umbrella of Muscular Dystrophy. I have Congenital MD. The type Darius has affects almost exclusively boys and is the number one genetic killer of young men. I know a lot of young men with this disease, so it hit especially close to home.] Through Darius, the film draws attention is a very cruel disease that many know little about, but it also drew attention to accessibility issues in general. The movie was a little rough at times because it was a freshman effort by young men and non filmmakers, but the concept was good- Take Darius from his ome in Georgia, that he has never left, in a cross country journey to experience things in America that he has never seen and at the end, hopefully get his chair pimped by the folks at MTV's Pimp My Ride.  I loved seeing the commradery of the young men who took Darius on this trip. It takes a village and it was fun to watch. Also, extra points that Darius provided original raps along the way. They entertained me to no end.

Nursing: If Florence Could See Us Now- D-/F+
So, a while back- I was at the movies and saw a preview for a nurse documentary and cried profusely. [Tangent: I have a slight reputation for crying during trailers. Last week, we went to see Wild and although I didn't cry during the film, I cried during two seperate movie previews. This is not an isolated incident.]  I thought this was it, so I rallied my mom, a retired nurse of 30 years, to watch it with me. Turns out, it wasn't. About 10 minutes in, I realized that the one I was thinking of was this movie entitled The American Nurse, and it was likely much better.This was so boring that even mom, it's target audience asked if we could find something else to watch. Womp. Womp. I will say though that its intention was great and that nurses deserve all the respect in the world.

The Dark Matter of Love- B+
I'd had this movie in my queue for a while and had contemplated watching it several times, but feared it would A. make me sad or B. Turn me against adoption. I usually want neither of these things to happen, so I just skipped over it. I am glad I finally decided to give it a go, because it was not as upsetting as I had suspected. The doc follows a family from Florida who is adopting 3 older children from a Russian orphanage [Tangent: I say older, but the siblings that were adopted were composed of 6-year-old twin boys and a 10-year-old girl. The age is important because the older the child is, they have found it is harder for a once-institutionalized child to bond and accept love. Sadly, this results in most children over the age of 10 never getting a forever home.] The film chronicles their struggle through the first year as they try to bond and build upon their existing family. It was very interesting to see the struggles with the couple's older biological child as well as the language barriers. The only downfall is the realism, because how often do adoptive families have therapists witnessing all of their interactions and helping them bond?

Zeitgeist: The Movie - C
Over the holidays, I made a deal with my conspiracy theory loving sister...that I would watch a doc of her choice and she would have to watch one of mine [Tangent: I still haven't decided 100% what I am gonna make her and her husband sit through, but I am leaning towards something feel good with little nourishment...maybe The Final Member or Gotta Dance. ] This is the film she selected and it is basically about the many conspiracies that the government is hiding. Frankly I was hoping for more alien stuff, but the concepts they dissected were 1. that all religions were the same and a work of fiction. 2.That 9/11 was partially an inside job. 3. That the banking system is a sham. I honestly can't say how I felt about it. There was a lot of data and I seriously value an interesting theory, but sometimes the theories ran off the rails a bit and kind of made them seem a little wack jobby. The music was so distractingly dramatic that it was clearly trying a little hard. However, I definitely learned a few things, and find it funny that these docs are always telling me how brainwashed America is and then proceeds to attempt brainwash in the opposite direction. I can't decide if I would recommend it or not...I guess I would if you liek this sort of thing and won't take issue with the 5 minute (literally...I clocked it) opening sequence with no narration and just a cavalcade of weird Willy Wonka boat ride style images. [Tangent: I told Jamie that I felt like that episode of Saved By the Bell, where there were subliminal messages in the Beau Riveire tapes to make all the ladies fall in love with Zack Morris. Zeitgeist very well could be the Beau Riveire tape of Netflix docs.]

InRealLife- C+
So if movies like Andrew Jenks, Room 335 restored my faith in millennials, this movie pretty much dashed it all over again. This movie, which (be prepared) opens with a very uncomfortably graphic conversation with two teenage boys about their porn habits, shows the reality of the information age and how it is kind of shaping young people. Although I share my life online, I am generally pretty self- aware of my privacy and my sense of reality remains pretty intact. I found this movie pretty interesting, but it made me pretty sad that for many young people, they are letting the Internet and social media dictate who they are. If you doubt this, go find an instagram account of a teenager. That being said, I still love the Internet and it has allowed me to do what I want to do and given me and audience for it...so I can't hate on it too much. I guess I am just glad I didn't have internet in my home until I was 16.  I know life can be pretty decent without it. 
It's Not Over - B
After watching the other Andrew Jenks documentary and loving it so much, I of course, was immediately on the lookout for more. Luckily Netflx offered me this one about HIV and AIDS and how its physical treatment of the disease and the societal treatment of its patients differs all over the world. Although this movie offered really interesting peeks into the life for people with AIDS in India and Africa, I found the piece about the young American girl with HIV the most interesting. [Tangent: Does that make me a xenophobe?] I think it made me realize that there are a lot of practical things I don't know about the disease and how as long as both parties in a couple are taking a new drug cocktail, they can engage in sexy time. Who knew? I seriously felt like the most ignorant person ever. I still didn't find this one as endearing as his freshman effort, but if I was judging it alone, non comparatively, I would definitely recommend it, especially to young people (Who I think is the intended target audience) as a means of educating them about AIDS.

Friday, January 16, 2015

OK With Being That Girl in the Wheelchair...duh.

The other day I was going to meet my best friend at the hospital after work and bring her some fudge and leftover Christmas presents for sweet baby Claire, who is still getting chemo treatments. We thought we might miss each other so she told the front desk worker, who happens to be disabled, to look out for "her friend in a wheelchair." The front desk worker, just kind of looked at her and said, "You mean Kimmie." Oops.

When I arrived we all had a good little laugh about it, but it then led me and my friend to have a conversation about how A-ok I am with being "That Girl in the Wheelchair" [Tangent: I mean...obviously.] Is it all I am? No. But is it easier than saying "That girl with the glasses" or "the girl who sometimes forgets to brush her hair" or "that girl that wears leggings as pants nearly everyday of the winter?" ABSOLUTELY! Why dance around it?
 
fuzzy hasty photoshopping...

[Tangent: I can only liken it to when all of my college roommates were black, and being the awkward naive white person I was at the time, I would always tiptoe around the word "black" when describing someone. Ex: I would say almost every other term to narrow down a population..."wears shirts sometimes"...."has hair"..."with the nice personality". Eventually I got slightly more savvy and would use phrases like "light skinned" or "with the braids" when applicable if I couldn't remember the name of someone.  This was until eventually I realized it was dumb of me to dance around the word "black." It's not derogatory unless you make it so. It's a factual part of a human being.]

After thinking about it for a few minutes today, within seconds, I was  pulling up for reference the blog of my friend in real life and online Mary Evelyn. Recently she had this post go ridiculously viral about it being OK for her son's disability to define him [Tangent: Of course that statement is gonna spark some controversy...mostly stemming from those that are not disabled or from those that live to get their panties in a twist. UGH!!! Those people! ] I saw her point crystal clear,  and it got me thinking if my disability defines me. And is that a bad thing to acknowledge? Does that make me one of those people that is constantly like "hey remember this bummer thing...let's keep talking about it and let me remind you about it every five seconds"?

Let me explain why I identified so much with her statement. Because I was diagnosed when I was two,  I don't ever remember living in a world where I wasn't disabled. [Tangent: I do remember being able to walk and sit on the floor and all that jazz, and truly I wish I could say that losing those abilities was tragic and laced with Lifetime movie soft jazz background music, but that's not entirely true. I am sure it was hard on my parents who had the adult burden of worry and foresight. To me being a small child, and thus not the brightest crayon in the box, I just kind of assumed that's how life was.]  It's just a thing that is part of me...as much a part of me as being a brunette or loving to sing despite having the world's most grating singing voice.

Also to say I wasn't limited by it would also be a falsity. I didn't say stifled by, I said limited by. TOTALLY DIFFERENT!  I never grew up thinking I would be a figure skater or a competitive roller blader, which seemed to be a legit profession in my youth. I had realistic goals. [Tangent: I know I know there is always gonna be that inspirational story on the Today show about a person with a disability climbing Mt. Kilimanjaro, but if you are around me for 5 minutes you realize I would rather channel my competitive nature into scrabble or pub trivia than any athletic pursuit.] I don't think that's bad. By having to find creative solutions to everyday problems, like picking up something off the floor with a hanger, I think i found out that I was capable of being a creative human and thinking about things a completely different way.  This made me good (reasonably) at writing and problem solving, which is part of what I do now....which happens to be with a disability organization. Disability defined my profession.

I thought, "Ok, I am probably not gonna do A, so let me just be the best at B." I knew my body was never gonna be super strong, and my entire life I was going to have to put people at ease, so I became somewhat outgoing to nip in the proverbial bud of ignorant assumpion. I feel like because I'm in a wheelchair, I have a sense of humor and have had to prove myself intellectually...much more so than if I wasn't disabled. Things were hard 99% of the time so I became so effing stubborn. [Tangent: Not always a good thing.] Ever since I was wee, I was hyper aware of somewhat scary concepts like spinal fusions and muscle biopsies, so I kind of became unable to take most things incredibly serious. That became my coping mechanism. My disability defined my personality.

There are certain personality traits that I have prioritized in the people that I surround myself with. Qualities like empathy and patience supercede having a good job or cool hair in my list, although most of the people I love have awesome locks. Even though friends are a mixed bag of lovable freaks, the majority of them have the following in common: open minded, unafraid of public opinion, helpful and stable. I like to think I have made them more thoughtful when dealing with people who are slightly different. [Tangent: I mean they aren't necessarily the types of people to interrupt a stranger eating a meal at a restaurant to tell randomly tell them, "I just wanted to tell you I have a friend in a chair too." Rather they may be more likely to hold a door.] My disability has dictated my friendships.

I kinda think if I weren't in a wheelchair that there's no way in hell I would be exactly the same human being, only the walking around version. [Tangent: Honestly, I am afraid of the bizarro version of myself and what that would entail.] Although I understand there is no Twilight Zone portal that would let me know for sure there what  I would be like or what my friends would be like or what kind of job I would have or who I would be dating. I can affirm wholeheartedly that I would be completely different if I wasn't born with MD. I like me better this way..so I'm ok with letting my disability dictate who I am. Being That Girl in the Wheelchair has been pretty badass so far.

Monday, January 5, 2015

2014 Year in Review: "One Day You're in...and The Next Day, You're Out."

Now that it's two weeks into 2015, is it still acceptable to write a year end review post for 2014? I'm never sure how to tackle these things because they are usually filled with such a broad spectrum of emotion and the the importance is very unevenly distributed. Kinda like chunky peanut butter...mostly smooth, until you hit a hard bit that you have to bite into. [Tangent:  By design, we tend to remember the bad things that happened in a year. Example, everyone remembers September 11 happened in 2001, but a lot of people don't remember that The Royal Tenenbaums came out that year...or even that I graduated high school and began college. Either that or we are so distracted by the next thing that we forget about the last cool thing we did. ]

I guess the necessity to write this post became evident when everyone and their literal mother were posting their year end montage videos to Facebook of what a great year they had, I couldn't do it.  I went through the motions of clicking on the link and constructing it, but something about re-posting it felt very awkward and sterile in my case.

The first picture that popped up, amid a rainbow of joyous confetti and balloons and gratuitous exclamation points, was a picture of my brother, now deceased, and the thoughtfully constructed Facebook post that I posted the day after he passed away.

 Of course, as expected, this was the significant moment of 2014, but as many articles have stated,  the algoryhtm to make these virtual scrapbooks were slightly flawed. By filtering by the postings with the most comments or likes,  it put a death in the family on the same plane of importance as celebrating a night out downtown or even eating something really pretty and hashtagging it #epicfoodporn. Because I laugh at inappropriate things, I found this almost funny.

It also reminded me that is pretty much how life works and it helped me decide that would be my mantra for 2015. In keeping with the Project Runway theme from the last 2 years. would be "One day you're in...and the next day you're out."
 

Life is cyclical and weird and randomly funny at times, so there no telling when you will be in and out of earthly favor, so staying balanced has been my saving grace. I know it sounds like a bunch of bullshit, so I guess my mantra will be just to be prepared and be open to try to bask in good whenever possible as stated so eloquently by my America's girl crush and genetic miracle, Heidi Klum. It's something I have to remind myself almost daily to avoid focusing too much energy on being "out".

As I remember my brother, I remember the last meal I shared with him. My mother and brother and Jamie and I all went to eat steak to celebrate the good things the previous work had brought. I had gotten a job that I was truly excited about [Tangent: ...and still am!] and we had learned that my sister was going to have a boy [Tangent: and how. my nephew is only 3 months old and weighs 18 lbs. Good god.]. Everyone was really happy and my brother had just come back from camping, so was in a really good mood. These are the moments I should have basked in more. I wish I could remember more, because looking back- I remember very little other than that everyone there was happy.

I miss my brother, and it bums me out whenever I think about the fact that he died way too early. There's no other way around it, but to say it sucks, but I try to remind myself to celebrate in equal measure all the amazing experiences I soaked up this year. There was some major good sprinkled in. [Tangent: I like to call it finding diamonds in dog shit, because I am a classy dame]

As I swipe through instagram, I become painfully aware at how bad I was at making picture perfect memories, but I am sometimes so thankful that I have this blog so that I can go back and look at my last year and have some record of the good times. [Tangent: Even if there are some not so pleasant ones peppered in...even getting enraged with a lady in the parking lot at work who wanted me to pray for her car.]. I love taking pictures, and decided one of my New Year's quests [Tangent: I like to call them that to make them sound more magical. Resolutions seem too practical.] take more pictures to chronicle the good I have in my life...for the times that I am "in"

What good things did you do this year? What's your mantra?

Thursday, January 1, 2015

Lisa Frank Makes it Weird

For days I have been trying to knock out a blog post, but inspiration was clearly not on my side, thus leading to a bevy of random paragraphs with meandering points that now clutter my drafts folder. [Tangent: My new year's goal is to read more and create more. These seem vague, so  easier to accomplish, but hopefully this will result in more blogs, artwork and less relying on buzzfeed and Entertainment Weekly as fine literature. I was doing so good with reading until the past year, and truthfully I have maybe only completed 2 books. That's disgusting.] It's as if the universe knew that I needed something to write about, and thus sent me a painfully awkward interaction with a stranger. MY BREAD AND BUTTER! 

 It was a normal tuesday, and my friends and I were cashing out our tabs where we we play weekly pub trivia. Nothing really super out of the ordinary [Tangent: Ok. Except maybe for the fact that we were 14/14 on the final question which was match these 90's sitcoms with the network they appeared on. I mean how are you not gonna know that? Oh wait, most people weren't as indoorsy as I was as a kid and had other pursuits. I hear ya.] Then suddenly I heard a voice over my shoulder saying, "Oh my goodness! Is it your birthday?"

Oh damn, I could see where this was going. [Tangent: OK...small thing- I neglected to mention what was sitting on the table in front of me. I may or may not have been sitting adjacent to a light up box of Lisa Frank stationary emblazoned with a technicolor kitten wearing a tiara. My friend Bethany lovingly bought my trivia team friends ridiculously amazing heartfelt Christmas gifts, and she knew that it would bring a smile to my face.] Everyone at the table could see where this was going. We all made our attempt to salvage the situation.

"No...it's Christmas"
"Don't you love it? It's Lisa Frank!"
"It's kind of a joke."

The situation bail-out wasn't going as planned so this nice woman continued, "You look like you're having fun. Are you having a nice time?" To which I replied uncomfortably, "sure." [Tangent: This wasn't a lie. We came in third place and I was riding pretty high on my knowledge of onions that helped me get a question right earlier.] "I'm glad you're out having fun. I've been watching and you look like you're having a good time. Merry Christmas." [Tangent: Maybe a little creepy.]


Damn. That. Smiling. Kitten. [Tangent: Just kidding! Did you miss the part where I mentioned that it lights up? It's awesome, just poorly timed.]

OK. I really hate coming off like a total bitch, I know the lady meant well, so I tried to be friendly. But people of earth, STOP DOING THIS! I daresay, these interactions almost exclusively serve the commenter and not  the recipient of the comment. [Tangent: I love a compliment. Tell me you like my boots or that I'm funny or that my nail polish is the perfect nude...don't commend me doing something completely banal...like existing or smiling.] It gives the commenter warm fuzzies like they have really brought some sunshine into the situation, but it almost leaves the person who gets the comment bewildered and made to feel like a toddler.  [Tangent: To be fair, when I am in public, I am not aware of my behavior or appearance. I openly interpretive dance to Katy Perry songs and gesture wildly and can only imagine that it looks like my mental stability should be called into question. Fair enough.]

I guess the moral of this story is if you are 32-year-old adult and have an affinity for Lisa Frank- prepare for condescension. It is inevitable.
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