neurodivergent-crow:

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spooniecollection:

fibro-larious:

thatwriterlady:

paintmeahero:

naamahdarling:

lexkixass:

naamahdarling:

fibro-larious:

The physician who was hired to make the decision on my LTD benefit appeal denied me based on “facts” like this one. The twitter account he referred to as evidence that I’m lying about my illness is hardly active. Also, the majority of the posts are:

• Photos of pets
• Photos from Timehop (aka from years ago)
• Photos of things around my house

The few photos that “appear to be a young woman who is engaged in life activities” and “awake, smiling and alert” are FAKE. People always use social media to show the BEST moments from their lives, even if they aren’t the whole truth. I’ve had some great experiences in New York, so of course I am going to brag about them! What I don’t share on social media are the consequences of being happy for a day. I don’t share the three days I have to sleep to recover from one stand-up comedy set. I don’t share the intense pain my body is in after walking around in Central Park for a day. 

They’re called invisible illnesses for a reason. People with chronic illnesses can look completely normal. They are hidden in plain sight. 

This sickens me though, because like

“appear to be a young woman who is engaged in life activities” and “awake, smiling and alert”

The disability system (which is built to make it difficult and often impossible to get benefits), doctors, and yeah, a hell of a lot of people, believe that functional moments mean that disabled people have functional lives.

Maybe I only want my social media to reflect the good times I have.  Maybe that’s the only form of control I have.  Maybe I want to reinforce the positive.  You know, the way people are always telling me to?  To focus on the things I can do?  Not to dwell on it.  Not wallow in it or rub it in people’s faces.

But the instant I behave like the person our culture is always telling me to be, I stop being disabled.

“Be disabled, but act normal,” they say.  Then they turn around and say “You act normal, you can’t be disabled.”

We are expected to fit the narrative.  We are not allowed to “engage in life activities”. (What does that even MEAN?  WHAT?)  We are not supposed to be “awake, smiling, and alert.”  I am forced to conclude that they expect disabled people to be bedridden and miserable at all times.  As close to dead as possible.

This is so disgusting.

Forcing people to constantly appear “disabled enough” turns disability, our lives, into a performance for other people.  It’s sick.  We should be allowed to live our lives and be happy to the extent that we can do either of those things.  We should be allowed to exist without harassment or gatekeeping.  And the doctors that evaluate people for disability need to be ruthlessly vetted for bigotry of all kinds.  (Of course they won’t be, the disability system WANTS doctors who will throw out cases at the drop of a hat.)

I cannot stress this enough: ALLIES, CALL OUT THIS BEHAVIOR WHEN YOU SEE IT.

THIS.

And the belief that you have to always look miserable/sick because of an invisible disability is pervasive.

When I was at Planned Parenthood – fucking Planned Parenthood – explaining to the doctor why I need an HBC implant, I mentioned that I have diagnosed chronic depression that seems linked to my period as that was when I’d have my absolute worst days, despite meds. The doctor blurted out in amazement, “But you’re so bright.” 

Right.

Because God forbid I have an actual GOOD day, when I DON’T feel like shit. Thank you, person who’s only met me once, for thinking that I must be lying because I don’t meet your expectations for someone who’s chronically depressed. Swear to God it took effort to not just reach out and slap her.

You can totally complain to the office manager about that.

You know, if you wanted to.

I normally wouldn’t suggest this because I know firsthand how upsetting it is to have to lodge a complaint, even if it’s as simple as writing a letter, but given that disabled people are likely to be poor, and poor people rely heavily on clinics like Planned Parenthood, this kind of thing needs to be ruthlessly extinguished at those clinics.  They MUST be held to a very high standard, because attitudes like this harm the people they are most likely to be dealing with.

@plannedparenthood, maybe some education is in order among your staff.  This kind of thing, while probably not intended to come across as offensive, is offensive, and it is oppressive.  You need to be better than that.

Some days when I don’t need extra help, I am forced to tote around a really heavy cane (which screws with my back and arms) in order to look –disabled enough– for parking (without getting disgusted looks), for disabled services at cons, etc. Sometimes I have to bring it with me to use the scooter at the grocery store, because otherwise I get whispered comments about fat people using the scooter because of their weight. 

Never mind that I am fat because of my disability. Even if it mattered.

As someone that lives with more than one of the “invisible” illnesses, I sympathize and understand the double standard that exists. Sure, I smile in my FB photos and whatnot, but that’s in between the excruciating pain of ligaments and tendons that are constantly tearing (Elhers Danis Syndrome), depression that can be sometimes be overwhelming, and chronic migraines. I’ve heard “Well You look fine”. Great, that doesn’t mean I AM fine. Illnesses go beneath the surface. People need to change their mindset that in order to be sick, you need to show it

I would just like to thank everyone for your support in this difficult time. I’m preparing my final appeal and completely overwhelmed and feeling quite hopeless. This company has almost a year of back checks they are refusing to send me unless I prove that I am too sick to teach in a classroom again. I feel that I have already proven that, so what else can I do?

All of your kind words and cries of outrage about this horrible situation are really the only things holding me together right now. Wish me luck in preparing the appeal to end all appeals!

It’s sickening that these kind of things happen. Seems like we always have to prove that we’re sick or disabled and everyone else is always trying to prove that we’re not. I’m too tired to write much but I do wish you the best of luck!

“Be disabled, but act normal,” they say. Then they turn around and say “You act normal, you can’t be disabled.”

THIS JUST IN: IF YOU ARE DISABLED YOU CAN NEVER HAVE A GOOD MOMENT EVER, OR YOU DON’T COUNT AS DISABLED