Chronic Pain/Illness (in)Visbility Photovoice and Digital Storytelling

In 2015, I was honored to help co-create a class with Dr. Ramona Beltran at the University of Denver Graduate School of Social Work on “non-traditional” qualitative methods, many of which arose from Indigenous methodologies; photovoice, digital storytelling, arts based, poetic inquiry, dance based, and more. This idea morphed into the InDIGIqualitative Research Methods class that is still hosted at DU GSSW, for Master’s and PhD students from all over campus.

My project that emerged from this class was finding a way to tell the story of those with “invisible” or less than apparent disabilities, especially the experiences of those with chronic pain or chronic illness.  It started with a digital narrative, telling the story of my own lifetime experiences with various chronic pain, focusing on fibromyalgia. As someone doing research with/on communities of disability, I think it is important to center my own experiences as well, as a way to both be self-reflexive, and also to share my insider status, rather than positioning myself as different or “other” as opposed to those I am studying.

Following this video project, I collaborated with Denver photographer Haley Carnefix who generously volunteered her services to this project. I reached out adults with (self-defined) chronic pain, chronic illness, and other invisible disabilities. Local participants were given the opportunity to attend a photoshoot at an accessible venue, while nationwide, some participants sent in their own writings and art projects. Traditional photovoice often gives participants their own cameras and asks them to go out into their world in order to document their experience/images that feel relevant to them. I modified this type of research in order to allow participants to participant in a variety of ways that did not require much travel or movement, even from the comfort of their own home, and gave them a wide range of dates on which they could participate so that even if they had pain flares or other medical challenges, they would not be discounted.

For those who showed up for the photoshoot, the prompt was to have them take two photos; one on how they felt the world viewed them, and one for how they viewed themselves when they were feeling at their most intense. All participants were welcome to bring any props they wanted, and to take their time in setting up their images (and were given access to the final images). The pictures and associated writings (to be shared in a forthcoming peer-review publication) show that most participants felt as though the world viewed them as tradionally abled, having their lives together, meeting expectation and assumptions of “normal-ness” while pain, exhaustion, anger, and frustration were how they viewed themselves.

Here are the images from the Denver photoshoot (please do not re-use without written permission):

Stephanie Others.Final

Image description: light skinned woman with medium length dark hair and bangs is dressed all in black, smiling while sitting on a beige couch, balancing a variety of hats on her foot, hand and head. She is gazing straight at the camera.

Stephanie Self.Final

Image description: Same woman is on the beige couch, with a light tan blanket over her body, head resting on a pillow while a large metal clamp constricts her head. She is wearing a comfy grey shirt, and has bottles surrounding her while her hands cover her face. She looks completely overwhelmed.

Doug Self.Final

Image description: Light skinned man with facial hair in black pants, a blue shirt, and a fedora tips his hat towards the camera, smiling while holding a elongated wooden box with beading on the bottom. He looks excited to engage with the viewer.

Doug Others.Final

Image description: The same man is now sitting backwards on the chair, facing away from the camera, without the hat. He holds a can in his right hand, there are support braces/boots next to him on the left, and his shirt is pulled up to reveal scars on his back.

Lizzie Others.Final

Image description: Two light skinned red headed women are sitting comfortably on a beige couch with their legs crossed and tucked up, arms around each other. The one on the left is wearing red sneakers, shorts and red and black tops, the one on the right is in jeans and a white sweater. They are both relaxed and smiling at the camera.

Lizzie Self.Final

Image description: The same young women are on the couch. The one on the right is in the same outfit, while the one on the left is now in plaid pajama pants and a t-shirt. The one on the right is wearing an eye mark and holding coffee, and the woman on the left is covered in overdue homework assignments, and is holding her medical marijuana card. They both look tired.

Shannon Others.Final

Image description: A light skinned woman with short red hair and multiple colorful tattoos and fantastic eyeshadow, wearing a black tank top and sneakers, is smiling at the camera lens while sitting on a beige couch, holding a blue 8 lb weight, with another weight at her feet. This image is full of energy.

Shannon Self.Final

Image description: The same woman is sitting on the couch, her feet up on a brown footstool, wearing blue fleece Cookie Monster pajamas, a black tank top, and is barefoot. She has ice packs resting on both ankles, braces on both wrists, a red bandana on her head, and is holding a glass of wine while looking away from the camera.

Danielle Others.Final

Image description: A light skinned high femme presenting person with long brown hair, glasses, and bright lipstick, is wearing a black bra, black corset, black underwear, fishnet stockings, black shoes and elbow length black gloves along with sparkly jewellery, posing sassily while staring at the camera.

Danielle Self.Final

Image description: The same person is wearing a black tank top, black shorts, and knee high light blue socks with rainbows, along with an orange ribbon and glasses is sitting in a wheelchair, their hands resting in their lap along with a bunch of prescription pill bottles, gazing off at nothing. On their left are two cans, and a walker, also covered in prescription pill bottles.

Shanna Others.Final
Shanna: How Others View Me

Image description: A light skinned woman with reddish hair and black glasses in a polka dot dress and black cardigan is sitting at a desk with a pile of journal articles in front of her. She is holding a pen in one hand while engaged in reading a book in her other hand, which is titled Sexuality. On either side of her are stacks of more books on subjects including diversity, gender, transgender, disability, radicals, privilege, liberation, age, race, queer, crip, and feminism.

Shanna Self.Final
Shanna: How I View Myself at Most Intense

Image description: The same woman is sitting at the desk, now wearing a black tank top and striped hoodie, with her glasses on top of her head, and her hands framing her face, rubbing her temples. She looks exhausted. The desk is covered with knee, wrist, and ankle braces, ice packs, heat packs, eye pillows, McConnell tape, K tape, pain patches, prescription and supplement pill bottles, a heating pad, ace bandages and essential oils

If you are interested in submitting your own images to include your experiences as part of the project, please send your images and one page of writing about how it felt to participate (in any format; word clouds, poetry, paragraphs, handwritten, typed, etc.) to skattari at Umich dot edu. I will send you back a consent form and will happily include you in this project

This study was approved by the University of Denver Institutional Review Board

Here are images of some the art submitted by participants:

To Be Posted..

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