#aeop

Being chronically ill is having literally every breath you take scrutinized. You’re smiling, laughing, getting around okay, maybe even jump or dance: “It can’t be that bad, you look fine!” You are stuck in bed from the pain, illness, & fatigue: “Just try harder, make an EFFORT”

Ya know what, folks? Just let chronically ill people survive their daily lives in the best way they know how. You are not in their body, you will NEVER know how hard they push themselves; how every joy, every physical action was fought for, how LOW every low actually is.

Because of internalized ableism we rarely, if EVER, show people our lowest lows. There’s an added pressure to be presentable, to blend in, to do things as independently as possible so we don’t feel like “burdens” or “buzzkills” to those around us!

Trust chronically ill people when they tell you their limits, they don’t need to “make an effort” they NEED a break, They’re putting their best efforts every day of their lives and it goes completely unacknowledged.

Chronic illness is a full-time job on its own:  

-Researching your illness -Organizing data -Arranging doctor’s appointment -Emotional/physical labor of said doctor’s appointments -Experimenting with treatments -Pushing through symptoms to continue daily life  If you’re LUCKY your doctor isn’t an obstacle in regards to attaining your diagnosis or treatment, If you’re **lucky** MONEY isn’t an obstacle in regards to attaining your diagnosis or treatment.

Chronically ill people are fighting for themselves EVERY DAY; even those with an episodic chronic illness that impacts their lives rarely and on occasion, they’re metaphorically and constantly walking on a tightrope, avoiding triggers, anxiously waiting for the next episode.

So next time you’re puzzled about how a chronically ill person is doing any particular activity or maybe you think that they’re only sick because they’re not trying hard enough… worry about yourself instead.

You don’t know their body, you are not in their body, you don’t know what it feels like, you DO NOT get to make that call.

-Standing hurts and the pain level increases the longer I do it, the exact time limits vary. In a bad pain flare it can be hard to stand even for a moment but on average days the pain levels peaks around 60-120 seconds.

-Standing up too quickly or for too long also makes me light-headed and makes my heart go into tachycardia (over 100 bpm) because of blood vessel/dysautonomia issues, it has been this way for years. 

-AND because of the laxity and fragility of my joints, I’m prone to injury (subluxations and dislocations) from physical movement/activity.

It takes a second to take a photo.

Me posing with a cane doesn’t mean anything is different about my health. Having a chronic illness is consistently inconsistent (just like the rest of me). 

Another storytime of a dream I had, this wasn’t last night but I found it in my drafts, it’s silly and all over the place but I jot down my dreams here so… here’s one of them, and if you wanna try and analyze, go ahead.

A long part of my dream was spent walking on Ocean Drive, no cane, and in a lot of pain. Even in the dream I didn’t understand why I attempted something like that, my pain levels were rising and my legs were spaghetti, I was losing my breath and my heart was racing.

It seemed to be a VidCon in Miami Beach? So lots of people were here.

The beginning of the dream is a little blurred but I recall walking in between buildings (as opposed to parallel to the ocean) and finding someone that would walk with me.. my friend W. I could grab his arm and lean on him a little bit. I also ran into my old friend E, I was walking with a small group now.

I got the idea to head towards a hotel where my parents had a “long term room but I didn’t have the key, I’d text my brother for the room number and my dad’s payment and they should let us in”

On the way, there were picnic tables and Kat B. was sitting at one of them. She wasn’t wearing glasses so she asked me to identify myself when I approached, Kristian B. was there as well.

We keep passing by hotels and the boys think its the destination to find that they are wrong.

Finally, we get to the hotel and it looks like Tower of Terror in the outside. We get in an elevator and the person running it looks nervous, he takes us up and opens the door on the floor and then pulled the lever to drop us, it’s really weird because the elevator doesn’t go all the way and I have half my body clinging onto the hallway but apparently it was some kind of Illusion and everyone was fine it was just some kind of test.

Eventually I end up on a hallway floor asking my brother which one is the proper room he gives me the number; the doors open to walk inside and the boys make themselves at home but I look around and there’s so much stuff indicating this is obviously not my room. The boys convince me to just take a rest because I deserved it. So we relax in the room, even get under the covers of the bed this was early in the morning so it was before the room service would come to clean the room. It turns out that my good friend E. was in a romantic relationship with my other guy friend and I recall thinking, “yeah that works a lot better than him and I would.”

Then the actual owners come to the room which is a group of young men that I would describe like a group of jocks from a 90s movie and they got really mad I was so embarrassed and I offered to wash the linen myself. There was some kind of weird chase scene throughout the hotel, I found myself hiding in other stranger’s rooms.

Response from Flitwick:

It’s not that you have to worry about who you offend, it’s that you have to be critical about your unconscious thoughts and the role you play in oppressive systems.

It’s acknowledging that possibly, you are a power majority to a power minority. It’s understanding that offenses are the very least of it; you underestimate the button you push because you lack their specific experience.

“Offended” is often the people that have had their limit of the same offenses day after day, it is the exhaustion of being under and misrepresented, misunderstood and discriminated against, it is closed and slammed doors, it is having to justify your existence with every breath you take. You’d be sick of it too.

Throughout history, society has committed many wrongs, but change is how we got as far as we have today. Tradition and habit do not excuse wrong doings; we learn, we grow, we do better the next day.

CW: racism/Trump, homophobia/Pulse, ableism/police brutality

A few months ago, I was in the hospital waiting room when Donald Trump was talking about “building a wall” on the news, a man across the room said to the guy next to him, “The thing about Trump is, he’s the only one willing to say what we’re all really thinking.” and then he made eye contact with me and gave me a cold glare.

Last week, pedestrians threatened to call the police on my sister and I because she was having an anxiety attack and screaming in the car and was starting to fight me, and I just thank God that they listened to me when I begged them not to, that my sister is autistic… PLEASE… no police.

This week, my mom tells me that she’s planning a trip to Orlando for us and by force of habit I immediately thought of arranging plans to meet my friends at Pulse… and then I remembered why that is not an option.

I am a survivor of violence. It has never been safe to be me; to be a woman, a person of color, to be queer, and now disabled, but 2016 is really not gonna let me forget it. 

My experience with lack of access at VidCon 2016 as a chronically ill wheelchair user:

On the first day a staff member directed me to a staircase as the only entrance to Registration when there was actually a ramp elsewhere (unbeknown to me at the time). Because of this, I was left at the bottom of the stairs while crowds ran passed me and my brother registered for me. 

There was a ramp at the halfway point of the long journey I made to the stairs, but there was no event sign and staff was uninformed.  

Throughout the convention it was difficult navigating the crowd and the large space as a wheelchair user, waiting for elevators, getting stuck on wire covers (some were the size of speed bumps and I wasn’t allowed to use alternate accessible routes because a staff member was attempting to control the crowd); with a disability traveling generally takes more time.

[Image of an audience and a wheelchair user sitting in the far back in the aisle, image credit top right: shep689]

I would attempt to get to my destination as quickly as I could but as I mentioned, without clear paths and more elevator options it was out of my control. For the most part I would arrive on time to panels but missed out on a few because I was unable to get there before they reached capacity. 

Though the website claimed there would be, I never saw a designated wheelchair area in the audience. Wheelchair users often sat in the aisles and in the back, there was no designated space for wheelchairs. At the outdoor stages, no designated areas also meant I was eye level with the butts of the crowd.  

These experiences ranged from exhausting and painful, to excluding and unwelcoming, to hurtful and humiliating.

[Video thumbnail is of a crowded standing audience in front of a stage, a screen displaying close up shots of what is happening on stage. Text on the foreground, “How to improve accessibility at your event”]

Above is a video of possible improvements to be made, not only at VidCon but any large event/convention. Let’s start this conversation about how we can make events like this more welcoming and inclusive for people with disabilities. Accessibility is not just a nice thing to do, it’s the RIGHT thing to do, and the LEGAL thing to do. People have a right to equitable access.