Performative Disability

Tomorrow is my disability hearing.

I’ve been rejected twice by mail, so this time I get to say my piece in front of a judge who has never met me before.

Can you hear my heart beating? Because you should, since it’s been pounding all damn day.  A friend was sweet enough to take me out for lunch and a new top and still I’m scared.  This has been part of my stress load that has gotten bigger and bigger and now it’s taken over my brain.

But I didn’t come here to whine about that.  I came to whine about the crap you have to go through to “prove” your disability.

I’ve asked for advice as to what to wear and what and who I can bring with me.  From what I can suss out, it boils down to this:

  • No makeup
  • No jewelry
  • Don’t dress “too nice”
  • Don’t dress like a slob
  • Bring your cane
  • Don’t over-exaggerate your illness
  • Personal statements and statements from others might help
  • Personal statements and statements from others might hurt my case
  • Bringing someone for emotional support might help
  • Bringing someone for emotional support might hurt my case
  • Take your meds
  • Don’t take your meds

It’s a river of bullshit and I’ve got no paddle.  Fuck, I’ve got no boat. Here’s the problem:

  • I wear make up once a week and during conferences (and look damn good in it)
  • I love my jewelry pieces; hell, I want to learn how to make my own
  • I don’t leave the house often enough to wear more than sweats
  • When I do leave the house, I like to dress ‘nice’.
  • Going around the block doesn’t require my cane.

And so on.  So, in order to ‘prove’ that I am not able to work, I have to perform this ideal of the perfect “disabled” person; Helpless, Despondent, Broke.  And while I have these moments a lot, especially the Broke, it’s at different levels at different days. Some days I can stay awake all day and get shit done, and some days I’m in bed napping all day because I’m too tired/in paid/depressed/some combo of the three to get up.  That doesn’t mean that I can do a 40 hour a week, or 20 hour a week or 10 hours a week.  Shit, I haven’t escorted since last fall and that’s 1.5 hours once a damn week.

But I have to put on the costume of the perfect disabled person tomorrow and plead my case.  I hate it.  I hate that my future is being decided on how well I play this game.  I’ve made it this far, after two tries through the mail without giving up.  I have legal help which have been helping me and will be there with me.  They want to catch the frauds so badly that the process is that fucking complicated and long. I’ve waited two years for this.  I was told to expect to be rejected with the first application, because “they always reject the first one”.  What a damn game they try to make us play.

So, here goes nothing. On with the show.

Photo by warrenski

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Performative Disability
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Bi Any Means, I Am Interviewed!

And you can hear my weird voice and talk about disability and repro justice and why Valentine’s Day is extra special for me!

 

Bi Any Means, I Am Interviewed!

Two Shots About Disablitiy

I’m back early from CONvergence because my brain hates me and is trying to kill me.  So I’m home and needed to let off a little steam.  That means you get two, two, TWO rants in one.

Are you lucky?

Continue reading “Two Shots About Disablitiy”

Two Shots About Disablitiy

The Dance Of The Brain Weasels

CN: depression, anxiety, ideations

Brain Weasels.  My term for when my brain starts trying to destroy the rest of me.  Depression, Anxiety, Trauma, fear of being alone and also fear of alienating others, all shove in and start making a mess of things.  They ruin my sleep schedule, fuck up my ability to do things, and the thoughts of self-destruction go from just being in the back of my mind to chittering in my ears.

Continue reading “The Dance Of The Brain Weasels”

The Dance Of The Brain Weasels

Hold My Hand

I’m going to let y’all in on a little secret: I can be a bit of a ditz sometimes.

There’s a trait in Sims 3 called “Absent-Minded” which means the Sim will sometimes just forget that it was doing.  It me. It so me.

Which makes it super difficult for me when I’m working in a group for a Thing. I’ll get excited, pile on responsibilities…and flake out when yet again, I’ve taken on too much.  You name it, secular organizations, theater groups, Second Life roleplaying sims, I get burned out like a mofo quick.

It’s been a source of stress for me, which sometimes leads to me not doing anything.  Not signing up or showing up or getting involved in shit.  Which for someone who wants to do more, sucks rancid goat balls.

Once I got my poor folks insurance way back in 2009, and once I was settled in Minneasota, I started the path of “Okay, I know I’m depressed and shit makes me anxious, how do I fix it?”.  Said path was like those haunted house rides you see at the midway of carnivals.

Hey, Feminace, you’ve never been on those rides because sudden jumpscares make you cry.

Shut up.

Actually, “exaggerated startle response” was the first of many words I learned in this path. “Generalized Anxiety Disorder” was another. “Borderline Personality Disorder” was something I’d only heard of in that movie with Winona Ryder where one girl stashed rotten eaten chickens under her bed.  I knew what “PTSD” meant, but never thought it could ever apply to me.

And finally “Inattentive ADD”.

Whut.

I was a straight A student growing up. I never made a mess, and from ages 12 to 19 I was tasked with cleaning not just my room, but the entire house twice a week. My room – spotless.  Teachers loved me. Administrators gave me special projects to do, like raising the flag in the morning, which I did faithfully on time. How in all of the hells could I have ADD?

Insert some research of my own here, and little more there, and some more over yonder, and whelp, guess I was wrong.

My grades and cleanliness were expectations imposed on me – the second I got out of the house, I couldn’t keep my space clean to save my life.  As for my grades, a combination of never learning how to study, being in a major I didn’t want to be, and depression and anxiety lead to me nearly ending it all, and dropping out of college in the second year.

Now, even medicated up the wazoo (I have an app that lists all of the meds I’m taking), I have a hard time starting projects. My desk remains a mess, shoved over to make room for Weasel to demand pets and doze off.

Mostly importantly, I have a hard time doing shit that is expected of me. I hem and haw. I freeze, not knowing where to start. I flail, and then I flake.

As I try to understand the funhouse horror show/cast of characters that is how my brain works, I had to finally speak up.

When I was tapped to be part of this merry band of bloggers, I was asked if there were any accommodations that I would need to make working with these folks possible/easier.

And I spoke up, and plainly. “Look, I’m not good with keeping on task.  I need my hand held. I need to be checked in on.”

Saying it made me teary. It felt like admitting to being a failure as an adult who is supposed to have her shit together already.

But it wasn’t a problem. And so I started making it known to other things that I had to do that involved other people – my forum-based RP group, the party room committee for CONvergence, my own partner.

It’s never going to get more comfortable for me, but I hope that in the long run, I’ll be more reliable to others.

And since writing this is making me sad, I need something to cheer me up.  Y’all know what that means:

A Korean man, Xiumin from the group EXO, in a white sleeveless shirt on a black backgroud, rolls his head up and faces the right.
Ahh, just a spoonful of Xiumin makes the angsty go away…
Hold My Hand

Accepting Help From Objects

One day, it was finally clear to me.

I couldn’t do this shit by myself anymore.

What couldn’t I do?  This is going to sound pathetic, but it was putting on socks.

I would haul one leg over the other and struggle, then throw the other leg over and ugh…

Don’t even get me started on tights. Or boots.

Washing my own feet in the shower (never a bath, because I’d never be able to get out of the tub without help) is nearly impossible.

See, it took me a bit to realize that I would need my cane if I was going to be walking or standing a lot. It took me even longer to realize that getting a disability placard was a good idea. Same with bring a folding chair when I go to escort (and actually using it). Asking my partner to carry my laundry basket to the basement still bothers me.

But this? Basic activities of daily living? It’s embarrassing. I’m embarrassed to write this. But, just as I’m getting over it to keep typing, I had to get over it if I wanted my life to be less of a struggle.

So I got this a few months ago from Amazon.

sockaid

Yep. I got a doohicky to help me put on my socks and tights.  Works pretty good, too.

I also got this at the same time.

grabby thing

No more having to ask my partner to reach under/over/behind most things, especially shit I manage to knock over. We already had a long shoe horn, I just had to ask for it and actually use it.

There are a few more things I need to get that I didn’t even know were available to help me: a foot scrubby thing that sticks to the tub floor, a loofah long enough to scrub one’s back, a pumice stone on a long handle.

It’s rough admitting this shit. I’ll have to update the form that my rhumatologist makes me fill out before each appointment that asks me if I need assistance with this basic shit. I’ve always said “no”, when it was increasingly a lie. Hell, when I was asked to join The Orbit, I had to confess that I needed a harder push to get shit done, because I’m just not good at prioritizing the important stuff due to executive dysfunction issues. Getting over my pride and actually telling people I need help with my disabilities is hard.

But it’s necessary if I want to have a life. And for you, if you’re reading these words and wondering “Should I get this/ask for that?”.

YES.

Accepting Help From Objects

When You’re Black and Autistic

Hate to start the week with a bummer, so first:

Because I forgot to take a picture of me in my red tights – twice – I decided to make my banner rock Red for Acceptance all month long.  Yay!

Okay, stop. Bummer Time.

I’ve written about my fears around being black with a mental illness and being terrified about police abuse before. But in most cases, I am able to communicate, either with my words, or with my phone.  And the thought of pulling out my phone in front of a cops just terrifies me so much that it’s one of the reasons why I don’t leave the house much.  Hell, I’ve make it clear to local friends that if I’m ever in crisis mode, DO NOT CALL THE POLICE. If I’m dying, I’ll be the one to take myself out.

Then I imagine not being able to speak.  Not being able to understand why these people with guns are yelling at me, grabbing me, hurting me. Having my routine interrupted by being thrown into a concrete box for years.

Or why I’ve been shot. Why am I dying?

It’s no surprise that black people aren’t treated very well in our society. We have less wealth, thanks to fucked up laws and redlining that kept our foreparents from investing in homes. Schools in our neighborhoods tend to be even more underfunded. And, as I’ve experienced, you get some real bullshit when you seek medical care.

With that in mind, guess how much later our children are screened and diagnosed with autism? By two years (CN: one of the links below the article goes to that piece of shit Autism Speaks, but the article itself seems solid). Two years that could have gone into early detection and beginning treatment. Two years of not getting a solid answer.

Two years doesn’t seem like much, but for any neurodivergent condition, it could really make a difference.

Also, we’re just not as well informed about what autism is, and how it’s just a difference in how the brain works. Not to mention the usual barriers for care. The number of sites I’ve looked up that still suggest crappy ABA as a treatment to try to make their kids be “normal” was saddening. I fear that the criticisms will reach our community late, subjecting too many children to ABA. Others have moved on to Autism Acceptance; we’re still working on Awareness.

*sigh* I told you this was a bummer.  No funny ending here folks.  Just, fuck this society that doesn’t value our lives at all, least of all the disabled.

 

When You’re Black and Autistic

The Disability Parking Police

You know these people. They leave notes on cars like this one or this one. They approach and confront frauds using those placards to just get better parking.  They’re doing it to help actual disabled people get the parking spot they deserve, if it wasn’t for these frauds.

Small problem: NO ONE ASKED THEM TO FUCKING TAKE ON THIS ROLE

There was no alien descending upon them to give them this mission.  There was probably no Council of Actually Disabled people gracing them with a secret badge. I’m betting good money that they probably don’t even know a person who’s disabled, never mind one who would ask them to police their parking spots.

See, as I pointed out in my previous post about disabilities, there are way too many people who are just ignorant as fuck about what disabilities are, so when they see someone with a placard leaving their car under their own power (no wheelchair, walker, cane), obviously they are a fraud.  And frauds need to be called out.  No calling the police or the manager of the store to report them or anything useful, just write a nasty little note and leave it on their car to discover.  Because writing nasty notes has always worked to make a fraud go “oh dear, I’ve been found out.  Time to return this placard.”

Like welfare and SSI, the rate of fakers taking advantage of disabled parking is low.  Low low.  Very low.  Look it the fuck up if you don’t believe me. So the likelihood of the Parking Spot Police actually catching a fraud is next to fucking impossible.  All they’re doing is spoiling a person’s day who is probably having it hard enough.  All they’re doing is trying to make themselves feel better, puff themselves up at the expense of someone who has a disability they can’t see.

All they’re doing is showing off their ignorance in the guise of trying to help “real disabled people”.

While never knowing what is going on with the so-called fraud.

People have these strange expectations of the disabled, that we much perform our disability for them to prove it.  They have to see us struggle, they have to see that walker, that wheelchair, that child who can’t hold their head up and drools a little.  They need to see it so they can feel sorry for us, feel better than us.  “But the grace of God go I” and all that shit.  So when they see someone who doesn’t “look disabled”, it angers them.  That person looks fine.  That person looks like a “normal” person. Fraud! Faker! Time to write a note and wait until they come out and demand proof (like who the fuck are you?). How can you feel sorry and superior to this person if you can’t see their brokeness?

Are you their doctor? Were you the person who signed off on allowing them that placard? No? Then, if you must patrol the disabled parking spaces, learn about invisible disabilities like EDS and fibro and Crohn’s and RA and a host of others.  Learn the difference between good days and bad days. Stop demanding that people perform their disability for your viewing pleasure.  Learn some fucking empathy.

I’ll be taking your badge, pen, and scrap paper now.  You’re off the force.

The Disability Parking Police