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Why These Patients Are Taking Selfies From Their Hospital Beds

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    Photo: Courtesy of Karolyn Gehrig

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    After artist and writer Karolyn Gehrig was diagnosed in 2003 with Ehlers-Danlos syndrome, a connective tissue disorder, she began taking selfies during her frequent hospital visits. Gehrig found that her photographs helped her feel empowered and in control despite the often dehumanizing nature of medical environments, and her movement, #hospitalglam was officially born in 2014. Now, using the hashtag, anyone with a disability or chronic illness can post a photo from a medical environment (focused on the person, not the procedure), join the project, and, in the process, raise awareness about chronic and invisible illness. I spoke with Gehrig about her own experience of disability, her long-term hopes for the project and how she hopes to empower people in treatment to take up space and advocate for themselves.

    Tell me about why you began #hospitalglam.
    "People assume a lot of things about my health because I’m a woman, I don’t look sick outwardly and unfortunately the same assumptions that are made about people in society are made in hospitals as well. We deal with all of those problems in medical spaces. So part of the project is about going into those spaces and holding your space. And enabling you to speak up and guard your space.

    "There are photos from a couple of years ago, when I was admitted to the hospital in an emergency. I had pigtails and I don't have anything else on my face but I have bright lipstick on because it was the only thing in my purse. I put on the lipstick because I knew that then everyone around me would be looking at my mouth.Then they would be paying attention when I was able to speak. And in taking that photo of me in the in the bed I kind of marked the frame as my space, and so that became a space in my head they couldn't violate.

    "I felt like it was mine, like it helped enforce my bodily autonomy."

    What do you want someone to feel when they post a #hospitalglam image?
    "I want them to feel the bridge between them and the other people in the project, and [know] they are not alone. I want them to feel connected, and I want them to feel strong for having done it. One of the biggest things that people have said to me is it's really hard to do. And I'm like, I know! That's why I'm so excited whenever I see people post about their experiences and talk about how they felt after doing it. And when you see people who have been doing the project for a long time, [you can see] their photos change and the way they talk about their health changes. There are a couple of people who've done the project for a while and gotten diagnoses after long periods of not having been diagnosed. They’ve bettered their care, gone on to do other projects, and they’ve started other advocacy work. It’s good!"

    Can you tell me more about the challenges of living with an invisible illness?
    "I think invisible illness is extremely difficult because it's difficult to diagnose and it's difficult to treat. It's not really taken seriously. Friends and family want to be supportive but tend to discount it a little bit because they can't see the markers of illness, so they don't really take it as seriously as someone with all of the traditional markers of disability. Until you get to a certain point where it becomes visible — like if you have gastroparesis and you have a tube, once you get to that point, then you're taken seriously. But until that point, we're not really given the accommodations so we really have to speak up a lot. It's difficult to speak up because we don't really give ourselves the love and care that we need in approaching our own illnesses and the room to accommodate our needs in the world.

    "When approaching the outside world and the medical community, because we don't have those visible markers, when we are saying 'Hey, we have a need,' we may feel like we need to overexplain. A quick point of reference is with disabled parking placards. A lot of people feel like they don't want to get them even if they [have a need] because they might get accosted in the parking lot when really it's nobody's business.

    "Also I just want people to stop suggesting yoga. Just stop suggesting yoga, that would be great."

    Looking at the project, it’s striking to me how strong the images are. The photos aren’t sentimental, and they don’t demand sympathy.
    "One of the great things about doing this project is that a lot of people in this project talk about it all the time. They talk about feeling good, feeling strong, and their bodies. A lot of it is about breaking down ableism and feeling really good about themselves going forward. It's just really strong positive stuff. And it's not always positive all the time, like a lot of it is also like, my body feels terrible today and I need to deal with that. But it's very it's honest and it's real and it's people living their lives. I mean, people with disabilities can do anything. And we do."

    Was there ever a moment where you struggled to cope?
    "The darkest year in my life was the year after I was diagnosed with Ehlers-Danlos. I thought that I would be dead in a couple of years. I thought that there was just a ceiling on everything; there were no possibilities open to me.

    "When you're disabled, unless you grow up in a family with other people who are disabled like you, you're still sort of the orphan because you're the only person who is actually disabled and everyone else is kind of dealing with it in their own way. So you don't have the culture that other people grow up with. It's similar to being queer and having to find that culture someplace. But until very recently there's been a lack of disability culture in the media. And so finding that culture has been — and I mean very recently, I mean extremely recently — finding that culture has been very difficult."

    You story has resonated with so many people. How does that make you feel?
    "When I’m having a really bad day, I go into the hashtag and I look at people and I look at the comments, and that makes me really excited because I like seeing this community that sprang up from it. And I like seeing that and knowing that exists. Because I know that I’m temporary, but I’m hoping that this will exist for a while. I’m happy that people are coming together. I'm hoping that this is a framework that will exist for a while and enable people to create stuff."

    Read on to see what #hospitalglam really looks like.

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