Friday, December 27, 2013

Repost: "This Is What Disability Binarism Looks Like"

Many thanks to hot-tipper Caroline for this link. Relating to the relations of the relatable over here!

That Crazy Crippled Chick: This Is What Disability Binarism Looks Like

"I exist on the grey area of disability, the part where things are neither black nor white.  I am neither wholly visibly disabled, nor wholly invisibly disabled.  I walk on my own, and yet, I use a wheelchair.  More people are with me in the grey area than you think.  Not everything is black and white.  And that is the core of disability binarism - the concept that things are all or nothing - you are either low-functioning or high functioning.  You're either "wheelchair bound" or you can walk.  You're either totally deaf, or you hear fine.  Get the picture?"

"This, THIS is why when I get on a bus with my scooter, I sit in it and ride, even though it's less safe, even though my scooter has tipped over on buses before. THIS is why I don't just park my scooter outside a bathroom stall and walk in. THIS is why, when I go out in public, I let people think that I'm a full-time chair user. THIS is why 99% of my college campus had no idea I can walk. Because of attitudes like this. Because of ableism like this."

Friday, December 20, 2013

What part of "rescue inhaler" do people not understand?

RAGE. I remember having to keep my no-fun-for-anyone medication in the front office at school. Good thing I had "smuggled" an inhaler into the locker room when I had an asthma attack after being forced by my gym teacher to "run a mile". (Oh, yeah. Everyone thought I was faking being sick even though I had multiple doctor's notes.)

Inhaler zero tolerance policy at school leads to 12 year old's death

Wednesday, December 18, 2013

Punch & Pills & Pie & Promo!

Yesterday, I spent an incredibly fun afternoon shooting ridiculously amazing photos with Lou of Louography-Photography. That is indeed my personal cane collection and medication regimen (give or take a few off-camera or candy-colored options). Here are the gems:

Thursday, December 5, 2013

Repost: "'Disabled' Mannequins Remind Us That Beautiful Doesn't Mean 'Perfect' (VIDEO)"

This story made me grin the grin of the completely delighted!

"'Disabled' Mannequins Remind Us That Beautiful Doesn't Mean 'Perfect' (VIDEO)"

"Pro Infirmis, an organization for the disabled, created a series of mannequins based on real people with physical disabilities, working with individuals like Jasmine Rechsteiner, a Miss Handicap winner who has spine malformations, and Erwin Aljukić, an actor with brittle bone disease. The project's title? "Because Who Is Perfect? Get Closer.'"

Tuesday, December 3, 2013

Repost: "Helpful Advice"

If physical ailments were treated the same way as mental ones, maybe more unafflicted people would understand just how ridiculous these comments can be when referring to depression, bipolar disorder, anxiety, etc.

Saturday, November 30, 2013

Ask Me Anything (Disability Edition)

Have you had any questions you've been too uncomfortable to ask? Ask me anything disability-related and I will answer truthfully (as long as the truth is mine to give).

Thursday, November 14, 2013

The Bipolar Conversation

I don't talk a lot about being bipolar because it takes a lot of energy that I don't usually have or want to spare. I was misdiagnosed/dismissed as depressed/crazed/an asshole until I was 30 years old. I kept being prescribed antidepressant after antidepressant that did NOTHING. It took a spectacular psychotic break and a stint in "adult voluntary day camp" for someone to get it right. (Thank you forever, Bill, for weathering that with me. I cannot emphasize enough the patience and love a person has to have for someone else in order to do that.) Edit 6/20/17: That's not actually what was happening, but I didn't realize it for a long time. While I don't doubt there was a certain level of love, there was more selfishness and embarrassment at high enough levels that they interfered with my trying to get help from drowning in suicidal ideation. I don't blame anyone for going through these emotions at such a heightened time, but the only reason I ended up in day camp instead of being admitted to the psych ward like I actually needed is that he got extremely upset over what that would mean for him. He was more worried about money and his image. I had to both not to kill myself and triage his feelings. We left the hospital and went home because he couldn't deal.

Edit 6/22/17: I made this edit purely to correct the record.

I was diagnosed as bipolar II, which means I spend more time hypomanic or depressed than manic. No one had told me that being so irritable I lost vision at the drop of a hat was a symptom of mania. I always had to be way too busy in order to function (full-time, high pressure job, classes at three different institutions, band, bellydance, burlesque, suddenly buying a car and getting LASIK, getting married, etc. all at the same time!) I'd always suspected I was bipolar, but hey - I'm not a doctor!

Initially, I was a bit worried that medication would dampen my creativity. I was also in such dire straits that I decided I'd worry about that after I wasn't feeling so many sudden destructive urges. Happily, lithium and lamotrigine worked and continue to work for me. They help me feel like I can move through the world with full access to myself rather than scrambling behind a bunch of b.s. just to get to my actual self.

Over the summer, I borrowed "Marbles", by Ellen Forney, from a friend. (Thanks, Faith! I read it! Completely! My brain could follow her combination of text and artwork!) Forney is a local cartoonist whom I've admired pretty much since I moved to Seattle and first saw her work in The Stranger. "Marbles" is Forney's own personal account of coping as an artist who was diagnosed as bipolar right before she turned 30.  I adore her work. Go look at it.

Here's a helpful page from the book:

Don't let "mild mania" fool you. It still feels incredibly wackadoo. I do experience full-blown mania, just not very often. Mixed states and rapid cycling are also barnacles of mine. We have so much "fun" together!

My bipolar is currently pretty stable and I still have access to my artisticness. I sure do like it that way.

Monday, November 11, 2013

Applying for Disability Benefits - What's the Diagnosis?

Thanks in no small part to my dear friend, Sarah, and her wickedly organized and ambitious brain, the wheels on my disability application bus are squeaking ahead. I've been going through this process with clenched teeth, because, even though I know it is necessary and I have every right, I DO NOT WANT to have to apply for benefits. It feels like a personal failure even though it isn't. I know from watching deserving friends and loved ones go through the process that it is grueling, humiliating, seemingly endless, exhausting, and often fruitless. I'm rounding the corner on three consecutive years of unemployment due to inability to work and have to face the fact that this is my last best option.

Due to my potpourri of chronic illness, part of the initial ordeal of applying for benefits has been figuring out exactly what my official disabling diagnoses are. The formal letter I recently received from Dr. A lays out alllll the sexy.

       Primary disabling diagnosis:
       Idiopathic syncope with mild cognitive deficit, complicated by medication
       induced fatigue.

       Disability related diagnoses:
        Myasthenia Gravis
        Bipolar II Disorder
        Anxiety Disorder
        Post Traumatic Stress Disorder
        Inattentive Disorder
        Asthma (allergic-atopic and intrinsic)
        Reynaud syndrome
        Irritable Bowel Disorder
        Chronic recurrent respiratory tract infections
        Syncope of unclear origin

The letter goes on, not as a comprehensive list of my health problems, but as an inventory of the disabling with the baffling (including phrases like "pO2", "borderline adreno-cortical output", and "multiple diagnostic investigations failed to give clear etiology").

"Huh." - Captain Mal

To finally behold this information in black and white is both relieving and sobering. I will now laugh/cry as I try to pare all of this down into "57 characters maximum" for my disability application!

Friday, October 11, 2013

Disability Stereoptype Lab: Let's Talk About My Cane

Let's talk about my cane.

I use it for:

-maintaining balance while standing and walking (whether it's because I'm feeling faint, my hip joints are shrieking, my muscles are refusing to comply, or anything else that crops up).
-reminding myself to conserve my energy and not walk too fast.
-navigating uneven terrain.
-keeping the bus driver from shutting the door on me.
-smacking handsy strangers.
I don't always need to use a cane, but when I do, I REALLY need to use it. If I had a dollar for every time I've been walking along regular style, hit a wall, and had to sit down while someone else went to fetch my cane, I would have so many dollars! Sometimes my need for assistance remains consistent for weeks and other times it oscillates drastically within a 24 hour period.

A few years ago, after my second bout of viral meningitis, I realized I was going to need a cane off and on for pretty much ever. Because the canes that are sold at the drug store are so depressing-looking, I ordered a custom cane online - the perfect long term solution! I got a shiny black number exactly my size with a modest sprinkling of rhinestones set into the handle. It even had a monogram plaque on the shaft until that got rocked off at the final Funhouse/Glenn or Glennda? show last Halloween. (This is evidence of me not being afraid to live life and being willing to push my limits, NOT evidence of malingering.) That cane has been beaten to hell and I will adore it always. It doesn't make me feel extra handicapped whenever I see or use it - that is, until I'm out with it in public.

You see, my fancy-style existence prohibits the general public from taking me and my cane seriously. I have been told I am too stylish and too graceful for my situation to be real. I haven't seen much hard evidence, but apparently there are droves of seemingly put-together people who are masquerading as those who actually need assistive devices or are even using those devices as fashion statements. (I'm being sarcastic, but I am also looking at you, trendy eye patch girl* and "Fred Astaire cane trick" guy.) While I don't doubt that there are a few fully-functional scammers/clueless fashionistas out there, I don't believe the situation is as ugly as people think it is. I feel the same way about the food stamp situation and the disability insurance situation. (Seriously, if you've ever been in the uncomfortable position of applying for either, you probably know how completely unjustified the modern "welfare queen" stereotype is. If you haven't, please remember to count your blessings and not throw stones.)

The designated "disabled and elderly bus seating" wild west showdown microcosm is a solid example of how the general public and invisibly disabled people themselves perform an exhausting, cautious, and distrusting dance around one another. The able bodied person taking up the last seat in that designated area is usually either zoning out or wonders, eyes pointed intently at a Very Engrossing Book, if the person asking for a seat truly needs it. The invisibly disabled person wonders if every single one of those reserved seats could possibly be filled by other disabled people and calculates whether it's worth the risk to try and stand during the long commute home since no one (even the bus driver) seems to want to acknowledge the situation anyway. How non-productive! 
Because of all the hassle I've received (even from other disabled folks) when using my fancy cane, I recently purchased a clunky grey one from the drug store to use as an experiment. Amazingly (not really), I have experienced zero trouble from strangers since I started using it more regularly than the other. My verdict: there's a persistent stereotype that exists for disabled people where they must "look" disabled AND disadvantaged in order for others to trust that there is no deception happening. This is terribly unhelpful and stressful. It is so unfortunate that our society's default mode is automatic mistrust of our neighbors. I'd definitely like to see that disappear.

*I do have to wear an eye patch at times to correct double vision. I'm sure it comes as no surprise that I have some fancy ones in my collection along with the beat up plain black one I've used for 20+ years. I have no problem personally using them for fashion as well sometimes, but I am aware of and respect the fact that other folks with impaired vision might feel differently.

Bill and me a couple of Halloweens ago. Photo: Kook Teflon