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PSA: Some wheelchair users can *GASP* walk

Wheelchairs are used for many disabilities; it could be very painful to walk, one may lack the strength to walk, be prone to fainting, have hypermobility, shortness of lung capacity, fragility of joints, muscles, or skin etc. 

REBLOG so people STOP harassing wheelchair users when they stand up and even WALK out their chairs in public.

Disability Misconceptions

Able folks seriously watch one too many misrepresentative films with wheelchair users because they STAY suspicious AF when they find out a wheelchair user can walk a bit.

Them:

  • So why are you in a chair then?
  • What do you have?
  • So this isn’t permanent then? When are you gonna be done with the chair?

Me:

  • For FUN, seriously you haven’t LIVED until you try getting around an inaccessible city in a wheelchair!! /sarcasm
  • None of your business. 
  • Probably never so stop asking.

Disabilities are on a spectrum and my body isn’t up for your inspection!!

Let disabled people LIVE!!!!!

The Other Side of Your Unsolicited Health Advice

TW: health, illness, weight loss/gain

You should try yoga!

I risk dislocation with the slightest movement and certain positions can make me injure myself or pass out.

You should travel farther to see specialists!
For the time being I do not have the money to even get the basic care that I need, much less travel.

You should lose/gain weight!
My illness has caused me to lose/gain weight, my medication that is keeping me stable has caused me to lose/gain weight, my body is in too much pain or too fragile for physical fitness, I need to eat certain foods so I don’t pass out, I need to eat certain foods because it is what I can afford.

You should try meditation and positive thinking!
If your body is collapsing underneath your skin, all the meditation and positive thinking in the world will not stop the pain, will not stop it from happening.

You’ll never get better if you don’t [physically] push yourself!
What makes you think I don’t push myself every day that I breathe? Every day that I’m still here? Pushing myself beyond what I can do does not improve the symptoms of my illness, in fact will just cause me more pain, and maybe even cause myself physical injury.

Tea and herbs help cure everything.
Not everything.

Don’t worry, you’ll find a cure.
There isn’t one, there may not ever be one, and it’s not my top priority in comparison to living the best life I can at this very moment, sick or not.

To my non-sick loved ones: I’ve heard these suggestions a million times already, when people find out I’m chronically ill or even when I’m out in public in my wheelchair, total strangers feel entitled to approach me and tell me how I should be living my life and the decisions I should be making for my body, so please stop using my illness and unsolicited health advice as a way to connect with me. Can we just talk about other things? Can you NOT participate in the endless carousel, the montage of people that condescend to me and try to tell me what to do with my body? Can you be my friend even if I never get better? Talk to me, but talk to me in a non-infantilizing or condescending way about my body and my medical journey. Talk to me about pretty much anything else.

Becoming Disabled and Internalized Ableism

TW: ableism

It’s such an interesting dynamic for the older people in the house to be going through disability for the first time and calling themselves ugly or worthless, causing themselves injury because they refuse to use their aids because of internalized ableism, and not only do I mean it when I encourage them, but I feel like I have to defend my young and disabled existence at the same time.

Disability affects all of us differently, and the intersection of being elderly and disabled is something I still have so much to learn about, but ableism is the thing that makes it hard to accept who we are, accept that we need certain accomodations and feel entitled to those accommodations.

Older people I love who are becoming disabled, literally say things like “I will not be an invalid” because this is the ableism society perpetuates, this idea that disability is the end. Fight that brainwashing. Know its not over til it’s over! You can adapt to anything! Life is still worth living!! You are still worthy of life and happiness! Always!!

Non disabled people, think about it this way for the rest of your life, something that is a mere convenience to you, something that might seem absolutely ridiculous to you, means accessibility for someone else, means equal access to the things you have access to! 

I am getting REALLY tired of the items and accomodations people with disabilities need in order to get things done being met with outrage and being called ‘’LAZY’ and in effect getting eliminated, discontinued, etc.

Re: "omg I can't say/call them ____ now?"

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.

You’re exhausted with having learn or re-learn/correct a few facts about certain communities, while they are exhausted of fighting for their lives.

She will be punished.

Invisible Disability Experience #103: 

Today I was using the power scooter cart in the grocery store, a mother and child pass by next to me, child says to mother (in Spanish, worth mentioning because maybe she thought I couldn’t understand?), “Mom, she’s riding one! Why can’t I ride one?!” Her response, “Oh, don’t worry son, God will punish her for playing around on that thing too.”

The one good thing about last night was that my mom got to witness herself how people approach me out of nowhere in order to give me unsolicted advice amongst other harmful and condescending remarks.

I was asked about why I was vaping with CBD and explained that it’s a trial period but so far it’s been helpful with my anxiety and dulling some of the sharper pains. Then came this condescending speech about how anxiety and depression is not real and how we are all in control of our emotions and how we think. (This is also one of the people that doesn’t understand the fact that I am chronically ill and in a wheelchair, because he thinks the only reasons to be a wheelchair user is to be paralyzed)

My mom hates it when I engage in conflict with relatives, so as usual I am trying to politely make it clear that what he is saying is incorrect and not my lived experience, and my mom INTERVENED with DAGGERS/hyperbole. 

She verbally hit him where it hurt, which I do not really condone, but it’s what happened, and they started going at it, and I had to tell the two of them to drop it because they were triggering Emi’s anxiety.

My mom had this moment of realization. This is how people talk to me when I go out in public all the time. I experience people like this on a loop, people who approach me because of my disability, sometimes just for being a feminist, and they approach me to lecture me about how I’m going about my life all wrong, that my illnesses are not real (because they are invisible), their own “UNIQUE” and “TOTALLY POSSIBLE” medical advice they have to offer me,  that I need not speak on issues of injustice or personal adversities because we live in an equal world, bla bla bla. 

She finally got a sample of the carousel I experience… and she had my back.

When talking about accessibilty and the response is “I never thought of it that way before” I think it’s great that people are learning but also really disheartened that it’s taken this long for people to consider the existence and needs of those with disabilities. They’ve always been here, we’ve always been here. Disabled folx are a marginalized group fighting for their rights all the time, fighting social stigma that says we’re worthless, or ugly, or will never amount to anything, or never go out and therefore your spaces don’t need to be accessible to us. Have you ever thought that we don’t go to your spaces BECAUSE you are inaccessible?!

It’s so weird to me that people are witnessing disabled people making commentary on cultural ableism, but then think that it’s still all about #KylieJenner. The conversation is needed, we need to talk about the ignorant idea that wheelchairs are “limiting” or that we are “wheelchair BOUND”, we need to discuss toxic fetishization of disabled bodies as well as their autonomy to be sexual beings if they want to be, we need to discuss where are the disabled cover girls? Why are people okay with seeing a wheelchair on the cover of a fashion magazine as long as the model is able bodied, while the idea of an actually disabled person on the cover of a fashion magazine is still so far behind? Calling out ableism is not an “angry mob”, I wish her no harm or violence, I harbor no ill will. This is not about Kylie, this about the fact that her cover shoot perpetuated a lot of ignorance and thus inspired an important dialogue about ableism, it needs to happen and it needs to be heard.

TW: ableism, fatantagonism

 “WHY DO YOU PEOPLE MAKE AN ISSUE OUT OF EVERYTHING?”

“SHUT UP ALREADY, PEOPLE KNOW THAT ABLEISM IS WRONG!”

“IT’S JUST A CHAIR!!! WHAT IS THE BIG DEAL?!” 

“YOU’RE NOT PRETTY, PEOPLE ARE JUST SAYING THAT BECAUSE THEY FEEL SORRY FOR YOU.”

I honestly don’t have the energy to go through all the ableist comments and screencap them all. So I will repeat: this conversation is NOT about Kylie Jenner, she just happens to be the highly influential, able bodied person playing a sex doll and on the cover of a magazine using a wheelchair. It inspired important dialogue about lack of representation and visibility for disabilities, lack of work for disabled actors/models and the slow move forward from just using them for “very special episodes”, the fetishization of disabled bodies and the desexualization of disabled bodies, and the belief that we are limited by our differences when we are truly limited by ableism, not necessarily our bodies. 

These are important conversations and narratives that need to be uplifted. It is a GOOD thing that these experiences, that are otherwise unthought of and neglected, are being expressed.

Why Kylie Jenner Posing in a Wheelchair is Upsetting (VIDEO)

An out of nowhere, middle of the night, early morning, post.

Most of my life has been spent feeling insecure and thinking there was something wrong with me. When I was very little, it was as simple as my social skills, kids my age did not understand me, I did not have many friends, I would try my best to fit in but typically ended up annoying people. As I grew older, my social skills still somewhat lack, but I have found people who find my company charming, I don’t annoy them, they love me, and I love them.

Around the age of 10, I started becoming incredibly insecure about my body, which we later became aware was actually the start of my depression and Body Dysmorphic Disorder. After two years at an acting conservatory, just a couple of months before I turned 20, I left school to focus on recovery and I haven’t looked back since.

Then in my adolescence, I was completely lost as to where I fit in sexually and romantically. The pressure to label my sexuality was confusing; I found certain boys charming and aesthetically pleasing, but didn’t want to have sex, so was I asexual? At 15, I was secretly romantically and sexually attracted to a girl… maybe I’m bisexual? Better just keep calling myself straight, probably best not to say anything about it, right? I mean, it’s just one girl. But then there were more girls, but I’m straight, right? That’s what I keep saying out loud, and if I say it out loud, it’s true.

In college, a couple more loud crushes on boys and then… the girl I like, likes me back, Her and I are together for a moment. So…. maybe gender doesn’t matter to me? I’m pansexual. Come out to mom. Mom is UPSET. “You’re a lesbian!” she yells at me through tears, “No, mom! Maybe someday I’ll like a boy in that way, I don’t know! Who knows?!”

Years go by. The moment I admitted to myself that I like girls, the false crushes on boys ceased. I currently identify as a lesbian and it is the most honest feeling label. My mother has become so much more accepting and even jokes with references to lesbian culture. 

So in this moment, late at night, I found this picture; that seemed to showcase it all. My awkwardness, my body, my sexual orientation. Today, I love my entire self.

Isolated/Bed Rest Spoonies

Can I get a “hell yeah” that the isolation allows us to forget how shitty human beings can be? Because damn, I come out of my room, I’m out in public, and the reminder is SO real!

Like, you sir, are the reason I am GLAD to be an isolated bed rest spoonie, because it keeps me from having to deal with people like yourself.

Why is being single such a negative thing??

Something’s wrong with you if you don’t have a significant other? 

When you rush a relationship, when you attain company for the sake of company, you’re asking for trouble. Don’t rush things, live in your moment.

Feeling a mutual attraction and love with someone is AWESOME.

Doesn’t mean being single CAN’T be.

I’m tired of the stereotype of single people being desperate for companionship, or unattractive, or lonely.

3

Fully admit to my #NoPantsFriday trial and error selfie photo shoot for #LoveBox and no shame, had a great time!

Been feeling really crappy about my body lately, being triggered by some doctor visits and health issues, but selfie photo shoots can be such a help!

LoveBox is an online radio show rated for mature audiences with weekly special guests and discussions about love, sex, relationships, and more! Join the conversation! Follow @loveboxmia on instagram and twitter! 

Invisible Disability Experience

“You don’t look sick” is erasure. I AM sick.

This is how sick looks. Open yourself up to the idea that perhaps sick has been misrepresented and under represented in media and that there are diverse aesthetics within chronic and terminal illness, different sizes, races, fashion styles…

Also, that we’re allowed to laugh and be joyful and we are STILL sick, still in pain, but screaming and crying about it 24/7 can get truly exhausting, don’t you think?

Today, at the realization that I’ve DEFINITELY experienced this specific type of erasure or ableism against invisible illness and disability over 100 times in the last few years (and today, twice in one day), I’ve decided to record them and tag them as “Invisible Disability Experience” or “IDE” so here I go.

It’s never going to stop being heart breaking when there’s an event that I’m excited about and most of my friends are going to and I find out that it’s not wheelchair accessible.

Get it together, world. You’re missing out, I’m a good time.

Accessibility at VidCon 2016

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.

I would really appreciate any Tweets or shares of the video over to VidCon and hopefully they will improve accessibility for disabled guests from here on out.  #AccessibilityAtVidCon