Yep. There. I said it.

You guys, you don’t even know. What was described to me was an amazingly saucy woman wearing a divine black dress, jaunty hat and slammin’ silver jewelry posing with a white cane. Presumably that is her cane, used to assist in mobility because she is visually impaired/low-vision or blind. Wait, what?

Yes. This fabulously fashionable, clearly divine woman modeling her sass and pizzazz is most notably visually impaired or blind.  Why is this important to point out? Why can’t I just appreciate her fierceness as fierceness and move on? Because…it’s so rare to see a visibly PWD in any media given any type of posturing that would assuage from inspirational tear-jerking that to see this makes my little heart pitter patter.

Rock on, fierce people with disabilities. Rock on.

Sometimes I want a tea cozy.

So, cough….. sometimes I’m fierce with a side of lace.

And that’s where this deliciously heretic remastering of Polite Society comes in. If you replace Proper Lady with Proper Disabled Person it actually applies to this blog!

xoxo

Happy Friday!

Jane Austin\’s Fight Club

I get this question a lot. Why, just today I got it five times – hers being the fourth. People ask if my guide dog is my best friend, friend, buddy, partner – never do they ask if he’s my guide or service animal or life saver. Never do they acknowledge the reality of a woman and a harnessed creature, never do they treat me or him like professionals. Never are we afforded privacy or respect. Instead, they see a cutesy puppy and a girl. For I am always honey, sweetie, miss or girl – never ma’am or ms. And never is the question asked without that sickeningly sweet addition of “he’s so adorable.” I just want to vomit.

Why’s it bother me so much? I’m probably too grumpy for my own good. That’s fair, maybe others enjoy being put on display as a cute addition to childhood novellas about kids and their’ puppies. Maybe. But probably it’s more about the feelings such disregard for service animals stir in me. The exhibition of my life and mobility aid as a quaint picture for others to watch and feel good about. Likely I’m not interested in being someone’s warm fuzzy so openly and honestly – get your kicks from afar, don’t drag me into them please?

Or maybe, just maybe it’s because even now relationships (romantic and otherwise) are not something able-bodied society feels we have or want. While there are numerous dating sites for people with disabilities, many go underused or aren’t known about at all. Then there’s the infantilizing of friendships between PWD and TAB folks; programs often use language like ‘buddies’ and ‘sunshine’ that one would associate with children but instead..are for adults.

As a person with a disability it is incredibly difficult to have romantic relationships and friendships taken seriously. When someone suggests my dog is my best friend, what does that say of my actual best friend(s)? When someone suggests he’s my partner, are they relegating my actual human partner invisible?

I realize that “man’s best friend” is an old adage and has meaning, and I also realize that some guide dog schools make promotional videos calling guide dogs soul mates of blind people. But until the romantic, intimate and friendly relations of people with disabilities are taken seriously perhaps we can back off using those types of relationships to compare the bond between human and animal, no matter the cute.

I’ve spent the past few months in a depressive funk. The last few weeks being the hardest thus far. I couldn’t get thrilled about life for more than a minute, couldn’t sustain hobbies or this blog. I couldn’t trust the people I loved who loved me, and I couldn’t find joy. I used to call that adolescent angst held over from a turbulent early adulthood. I’ve had others say the same thing. Ever been accused of ‘emo’ behavior?  Ever had to then look up ‘emo’ online to figure out whether or not you were, still confused because emo should be emotional and depression generally involves the lack of emotion and/or siphoning life down to a few choice unwanted emotions?

As I’ve worked to find solutions to the hole i’ve been hanging out in, I’ve also been challenigng myself on how I embrace myself during the times when my brain chemistry and psycho-social needs don’t feel chirpy and culturally appropriate. Where once I would force social interaction to try and ignore depression away, I’ve avoided or canceled plans. I’ve treated my brain as a sick thing needing rest and healing rather than an annoying thing needing a jumpstart. I took my concerns to my doctor, I talked about them with my partner. I was honest for the first time in years of depressive bouts, admitting first to me and then to others that I’m sick. And when my medicine doesn’t work for me I need help getting better.

What started my aversion to acknowledging the impact of mental health in my life? Television! Those stupid bouncing blob Zoloft commercials, the ‘depression hurts’ commercial sagas and the constant talk of depression in the news. Instead of normalizing depression so that I felt it wasn’t an isolating, singular thing it turned depression into something common and fixable; so if my current medications or meditations weren’t working there was something wrong with me. What else? Popular culture! The ‘everybody’s on something’ I keep hearing. My own grandmother’s on them because she’s sad! If everyone’s on an anti-depressant is depression really as bad as it seems? Is the drug industry lubing us up for political corruption (further or otherwise)? Is it a hoax? Am I just a sucker giving in? Fight the man, fight faux-depression!

I fear I’m overmedicated, undermedicated, not really depressed, too depressed, wrongly diagnosed, anxious, sedate, suicidal. I fear I’m believing a cultural narrative, just fine. I fear I’m just messed up. That’s half the battle – depression takes your whole self and makes it feel wrong, makes you feel wrong. Instead of depression being the culprit it becomes the right and you are simply misaligned. You backtrack and doubletalk to fix your thoughts with what depression pumps out.

But, you say – don’t we need cultural messages normalizing disability to help folks with disabilities exist in this world? Sure! Yes! Indeed! And maybe bouncing blobs of medicated pencil lines on television are helping someone. But not me – I see bouncing blobs and hate my body. Why not? Depression gets me hating myself fairly well as it is, I’m prime for further body hate messages. I see ‘depression hurts’ commercials full of dreary humans who get the right drug and are suddenly water rafting and playing with kids (also meaningfully smiling). So I’m on some drug, where’s my meaningful smile and water rafting? It….doesn’t come with the prescription. Because those messages aren’t actually about people working with depression and living in spite of it, those messages don’t normalize the person with depression. They just normalize taking medications. So I won’t turn heads if I’m on Celexa but I *will* confuse folks if I’m not better and taking Celexa.

And maybe, just maybe – I want to have a conversation that doesn’t start with “oh everyone’s on some form of pill” and ends with “you’re fine.” Maybe I’m not. And maybe that’s ok. Maybe you support me, I support you and we get through life together?

Sometimes it’s because I have this winning personality and fabulous charm that I acquire a seat on the transit system of my choice. Seeing me grappling a pole and straddling a labrador, someone will look up, shake the dust from their shoulders and say ‘do you want to sit down?” Once I said yes and the lady inquiring just went back to her reading. I thought it was insidiously cute. Once I said no and some guy forcibly put me in his seat. That didn’t last long, and neither did his er, grip.

I saw the above sign on a train window and thought about the implications. Rather than saying “this seat is intended for people with disabilities or the elderly” (problematic as that is) it said to offer up this seat if it’s needed. If it’s needed. How’s that get defined? Who gets to define that? How quaint that the sticker is intended to direct able-bodied people to do the ‘right’ thing whatever that may be, if they think it’s merited or warranted in a given situation.

Not that this is a new concept, people with a certain amount of privilege having the authority to decide when a person without a certain amount of privilege has access to things and services. But to be faced with it on such a visceral level, a directive on a train I’m riding, is to remind me of where I am and how little agency I’m afforded by this able-bodied world. It reminds me how often living can feel like fighting. Fighting for the right to define myself, my identify and my needs without interpretation and renegotiation by others.

It ain’t easy to redirect this fighting energy into positivity. It’s hard to re-imagine that people are kind and good and well-meaning. But sometimes they’re not; sometimes they’re patronizing and in need of a pat on the back, a good deed for the day and you are going to be it. And that’s where inserting our identities and autonomy (and right to choose our need) comes in to place. And that’s when I want to strip all those crap directive signs off the windows and walls I see them on.

More like….this seat is for folks who say they want to sit in it. Stop defining and identifying bodies for others.  Self determination much?

I thought about that, about how my liberations are separate and yet equal, how I am not free until all of me is free. So I share with you a poem I wrote a few years ago, inspired in part by Audre Lorde – a warrior poet who too wanted all of her to be free.

But I who am bound by my mirror
as well as my bed
see causes in color
as well as sex
and sit here wondering
which me will survive
all these liberations.
- Audre Lorde, from "Who Said It Was Simple"

A flame burning on pyre or alter
somewhat shifty - an unwelcome breeze
lit by another hand, another body
reclaimed in a few brief moments
now a testament to what it means
to survive
or the very art of survival
punching in and then out
the echo elevating itself above
obliteration or reincarnation
another matchbook, a wick not trimmed
another isolated liberation

I had the piece described to me. For other non-visual viewers, Fraser has small or not quite completely developed arms and a thin body. I won’t ruminate diagnosis or disability, that’s not important. What is important is that Fraser starts his piece in boxer pose, using legs/feet and head to fight back at the (not safe for work) things being told to him. By the end, you here his screams as blood pours from his mouth and he’s down, beaten into a pulp by the ignorance, hate, and oft well-meaning things people without disabilities say to those with them. His body, broken and lifeless, is dragged from the stage.

As the piece finishes and the maniacal laughter of the voices Fraser has so courageously fought against drains out, I find that I am crying. I’m laying in a heap of my own vocal demons, swarming around my head. Instead of well-placed blows with legs and head, I’m using my words and a face set in anger ready for action and reaction. But like Fraser, by the end of the day the battle generally takes me down and I too am laying in a heap to be dragged to healing by someone who loves and cares about me. If not me, then another comrade trying to live life as a person with a disability is being held by my somewhat broken arms.

We get up out of bed, visible or in/visible disabilities in tow and walk into the world and face it. Often out of necessity we are poised for battle. We face the very voices Fraser’s piece uses. Inspirational comments take away our base humanity. Faux-role-modeling takes away our right to exist as individuals and make our own mistakes. Inappropriate questions about our sexuality or daily living tasks degrades us and renders us as yet another side dhow theatric for public entertainment. Asserting our independence and denying assistance angers those trying to ‘do good’ and turns us into mean and spiteful beings.

Our existence, be it visibly or invisibly disabled is not simply one of living a life to our own mandate. We aren’t permitted that mandate by so many bodies and voices. We are instead expected to entertain, educate, inspire and be grateful for any amount of attention the public or those who barely know us feel fit to put upon us. And rarely has it anything to do with the fabulous outfit, intelligent thing spoken, type of tea being drunk or even the weather. It has to do with our bodies, our health and our being.

And while Fraser’s work is intense and emotionally devastating, that type of barrage is still seen as appropriate. And the toll is seen as dramatic.

So how do we live? How do we fuck, fight, eat, drink, shop, find community, love, enjoy moments? In the peaceful spaces we can find – in the respite. In those times an able bodied person doesn’t say “oh how inspirational you are” but rather “hello, my name is ….. what’s yours?” and treats us as humans, in ways they themselves want to be treated. In ways that view the person first, the disability next.

Here’s his performance.

This afternoon I was accused of faking it. I wasn’t screaming in a diner, there was no cute elderly applause from a few tables over asking if they could have what I was having. In fact I wasn’t doing much of anything really, just using a cell phone. I was typing away and listening to music while my dog laid curled at my feet on another dirty bus when I heard, “she’s not really blind.”

Oh really?

The women speculated loud enough for me to hear, whether the dog was really a guide dog. I had incriminated myself by using a cellphone. Only sighted, able-bodied people used those. While I could sarcastically theorize the various ways in which blind people would communicate in their world, I’ll focus instead on the problem at hand: identifying and defining one’s disability for them.

Oh it’s true, bus drivers tell riders they don’t need the bus lowered because they should be able to hop down, paratransit and shuttle drivers assert that guide dogs are really pets in disguise. It happens. And every time it does, someone has identified a person with a disability and redefined their body and self based on some preconceived notion. Not limping enough? Doesn’t need that cane! Not drooling? Doesn’t need that chair! Not waiving arms frantically in front and to the sides? Not blind!

Folks with disabilities in the UK are feeling it right.now. Per the new governing body of the United Kingdom and a large spending deficit, the government has decided to review and overhaul how disability benefits (in particular living allowances) are divvied up to the folks who currently receive them. Assuming there’s a huge abuse, the government is arguing that there should be a medicalized overhaul of how benefits and funds are provided. Not unlike the US system of Social Security for Disability, folks would have to resubmit their applications (note: they’re already receiving funds – already approved!) and be reviewed by a medical board to see if they do indeed qualify.

But, you say – the US does it, it’s fair! Life’s not fair, child. And external (nay, medical!) observations of disability or disabling condition are quite bias. Take for example my optometrist of 2001. He encouraged me to get my drivers license. I had 20/200 vision in one eye and the other was fake – completely and wholly unqualified to drive a motor vehicle. He also was the doctor I was sent to by the Social Security Administration when I applied for disability benefits. I was denied, of course – probably because I was supposed to drive a hummer later. He also tried to dilate my prosthesis….

I do not currently drive, fyi.

Even within the construct of medical and scientific opinion, disability is in flux. Many diagnoses are by exclusion or elimination. Many are invisible. Some may seem to be less burdensome to the individual than they actually are. Many seem fake. If relying on able-bodied opinions and observations of disability were to define the livelihood and access of a group of people, we’d all be screwed.

Oh wait….we are.