#invisibledisability
I was recently yelled at by a man driving by as I was walking into a Starbucks after parking in a handicap spot. “Liar! Liar!” My first thought was “you weenie come back and say that to my face!” Then the shame set in. For awhile I felt guilty of…something. I know I’m sick but I know I don’t look sick, so maybe I don’t deserve my placard? It’s confusing and I understand. But then I reminded myself that 96% of chronic illnesses are invisible. Just because I look fine doesn’t mean my illness goes away or isn’t serious enough to be disabling. It’s not me that’s somehow confusing or misleading, it’s society and our expectations and stereotypes. Sick doesn’t have a look and neither does disabled. This idea that to be valid your illness or disability must be visible is ludicrous when you learn how many people are suffering from something unseen. Society needs a major reform in many ways, but especially with respect to its treatment and expectations of chronically ill and disabled people. What we really need is to just stop being so dang judgmental in general! Was it ever any of his business where I parked or if I “deserved” my license plate? No sir! All that I ask of people at this point isn’t even kindness, just neutrality or even indifference! Let me be! Can I just get my chai in peace?!
This was taken years ago, when I went into my doctor to get checked out after being assaulted. I took photos, as I always do, to enforce my control over the space where I would be examined; where I would go over what happened and determine whether or not I’d come out with more injuries than I already guessed. I never shared it because some things are for me, and I did not want to give it away.
I’m sharing it today because so many of us have survived, and will keep going. We are here for each other, and don’t need to cut ourselves open to receive support. Our strength is flexible, and looks however we need it to look. You are not doing it wrong as long as you stay alive.
I wish none of us had to go through this.
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#HospitalGlam #violence #tw #sexualassault #ptsd #invisibleillness #invisibledisability #survivor #metoo
[#imagedescription: I’m disheveled, on the edge of a medical bed in a gyn exam room, gripping the light above me. I am looking into the lens.]
https://www.instagram.com/p/Bom7SJpHufx/?utm_source=ig_tumblr_share&igshid=1nypcx87plyn3
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Each interaction I have with a doctor bridges a gap between our knowledge of my body. Every interaction I have with another sick person bridges a gap in our understanding of disability and what is in our power. #HospitalGlam
[#imagedescription: I’m in black, at the foot of a doctor’s bed. I do not appear ill.]
#invisibleillness #invisibledisability #ehlersdanlos
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Reminder: I’m posting older work at @dunlop_art_gallery all week as part of their #URLIRLyqr exhibit.
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Friends, allies, everyone- pass it on!
This is an important issue that needs to be talked about. I’ve heard so many horror stories about people’s experiences trying to get the help they NEEDandDESERVEto live full,happy lives.
I’m tired of hearing from my friends that they are being ridiculed,shamed, reduced to labels, mistreated, infantilized, dehumanized,tossed aside,negated, silenced, objectified, belittled,and ignored by the people who are supposed to care for and support them.
I’m tired of a medical system that is more concerned with dishing out labels than alleviating suffering and empowering its patients.
But mostly I’m pissed off that my loved ones are SILENCEDandIGNORED. I’m fucking pissed that people tell them its in their head, shame them, and act like its not important. It’s fucking important, okay?Don’t be the person who takes people’s voices away; give them more opportunities to use it!
It’s fucking ridiculous and we can’t pretend like this isn’t an issue any longer. We can’t shy away from addressing this because we are uncomfortable facing our own ableism.
NO ONE IS FREE WHILE OTHERS ARE OPPRESSED.
No more shame.
Everyone’s story matter.
PASS IT ON, FRIENDS! :)
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You can’t always see it.
Make a statement with the light version here, or the dark version here.
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This is my whiteout pain face. It doesn’t look as depicted on the pain scale. #HospitalGlam
[#imagedescription: Black & white selfie post-stress test. I’m on my back, in a hospital gown, braided pigtails, with leads attached to my chest.]
#chronicillness #disability #invisibleillness #invisibledisability #ehlersdanlossyndrome #painscale
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I continue to practice #HospitalGlam at every visit and procedure because my relationship with my body, each clinical space, and each doctor, nurse, or technician evolves as I keep going. We have new conversations, not only about my health, but about the relationships between care providers and patients, what is observable, and how we can be seen. Every discussion is different, even with doctors I’ve now known for years. The process is more revealing than the photos, and is another intimacy shared with the people in those rooms. It is work, for all of us, and it pushes our understanding further. /////
[#imagedescription: I am seated sideways on a clinician’s gurney positioned upright, stretching a leg off the side while the other is tucked under my body, twisting at the waist, chest open to the camera, arms wide. In a magazine rack on the wall behind me, there is a title labeled”Living”]
#disability #chronicillness #ehlersdanlos #invisibleillness #process #artistsoninstagram #invisibledisability
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While we mourn, please remember that tragedies create both physical and invisible disabilities. Those impacted by today’s events are likely to have mental health diagnoses which will complicate interactions and treatment for other, unrelated heath concerns that may arise in the future. Additionally, they will have new accessibility needs.
While you are calling to register your feelings about today’s events with your congressional representatives, please make mention of #HR620, a bill that would alter the #ADA, rolling back civil rights for disabled people, present and future. Thank you.
[#imagedescription: #hospitalglam image of me, standing between the curtain and bed in an exam room. I do not appear sick. One of the things discussed this day was the impact of #PTSD on my body.]
#invisibleillness #invisibledisability #handsoffmyada #ableismesq #chronicillness #disabled #disabilityrights #civilrights #guncontrol #fuck #thoughtsandprayers
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