Medical Advocacy Art for MEDX

These pieces were created for Stanford's Medicine X Conference by 2016 ePatient Scholar Heather Corini (formerly Aspell).

Read about Heather's "Making the Invisible Visible" photo project also created for MedX 2016 here.

"DREAM VERSUS REALITY"

Mixed Media Sculpture. August 2016.

This piece consists of two wooden house-shaped boxes on a 12 inch by 14 inch wooden board. The first "Dream House" is filled with a vignette representing the traditional "American Dream," inculding a plastic bride and groom, plastic toy carriage with a baby, plastic baby blocks, a diploma and graduation tassel and a white picket fence. The "Dream House" is constructed primarily of cheap, plastic, fake-looking materials to acknowledge the unrealistic nature of the "American Dream" for any person, whether they are healthy/abled or chronically ill/disabled.

"Dream versus Reality" | 2016 | Heather Corini Aspell — "*Dream versus Reality"* | 2016 | Heather Corini Aspell

The second "Reality of Chronic Illness" house is filled with boxes from various medications Heather has taken for her chronic illnesses, as well as a line from her at-home infusions, a syringe, an empty pill bottle, an empty vial of medication, and a test tube for drawing blood. This house reflects the reality for many people living with chronic illness. The house is overflowing with medications, as Heather's reality is overcrowded with the day to day aspects of managing her complex chronic illnesses reflected in these materials.

With this piece, Heather communicates the complex emotions behind having traditional life dreams dashed by chronic illness and all of the ways it imposes on her life, as well as the general unattainability of the false American Dream. There is tension between the "fake" and ultimately undesirable dream house, and the also undesirable reality of her life with chronic illness reflected in the reality house. Ultimately, Heather would prefer something that looks like neither of these two houses.

Heather hopes that this piece can initiate discussions about the importance of addressing quality of life concerns with patients who are living with the demands and impositions of complex and difficult to manage chronic illnesses.

"CALL DOCTOR IF YOU EXPERIENCE MOOD CHANGES, SADNESS, DEPRESSION OR FEAR"

Mixed Media Sculpture. August 2016.

"Call Doctor if you Experience...." | 2016 | Heather Corini Aspell

This piece consists of toy crib on a 12 inch by 14 inch wooden board. The crib is filled with actual vials of medication Heather has taken for her chronic illnesses and lined with "Caution" washi tape. The crib is covered with warning labels from her medications cautioning against their use before and/or during pregnancy from Heather's medications.

With this piece, Heather communicates the complexity behind making the decision to take fertility altering drugs while being of childbearing age. Heather started on many of these medications in her teen years without any discussion about the costs or benefits as they related to her ability to start a family. She subsequently researched the medications, and learned one in particular had long term effects on fertility. Although far from being prepared to even think about having a family, she made the decision to stop that medication. Now as a married woman in her thirties, Heather is faced with increasingly complex feelings and decisions surrounding her fertility while taking multiple medications that impact fertility in various ways.

Recently, she has had to make the decision to start medications with known and unknown effects on her fertility, and consulted with a specialist who indicated that there was no information about the long term fertility effects, and no research being done in that area for one. This piece reflects the difficulty of the decision about whether or not to take that medication in particular, as well as the general complexity of always having to think about how each decision she makes for her health can ultimately impact any future children she might choose (or choose not) to have. Each day as she takes medication with these warning labels on it, she is reminded of the conflict between her desire to start a family with the reality of needing to take potentially fertility altering medications in order to function in her daily life.

Heather hopes this piece will initiate discussion about important conversations doctors should be having about family planning with their patients when prescribing these medications, as well as the importance of engaging in research to determine the effects on fertility for medications being used in individuals who are in their childbearing years.

"BUT I'M A PERSON"

Mixed Media Sculpture. September 2016.

The piece consists of a clothing store style mannequin made of wood and fabric. The mannequin's face is featureless, and it has no legs. It's arms are holding a whiteboard, hospital mask, and CVS pharmacy bag. It is dressed in a typical drab hospital gown. The mannequin's mouth is covered with black tape. The patient mannequin represents the dehumanizing experience of being a chronic illness patient. Many chronic illness patients believe that most healthcare providers see them just like this faceless, voiceless mannequin. Various aspects of the healthcare system, including the sterile offices, boring, undignified uniform-like hospital gowns, and the impersonal ways that patients are sometimes treated by healthcare providers while being shuffled through the system can have the effect of making patients who are navigating the healthcare system feel less and less human.

With this piece, Heather hopes to initiate discussions about how to improve the healthcare system to make the experience less dehumanizing for patients, from improving patient/doctor communication and encouraging physicians talk to patients as individuals about their individual goals and quality of life concerns, to redesigning medical spaces and hospital gowns to feel less sterile and unwelcoming to patients.

Because she has been chronically ill since her childhood, Heather has often experienced feeling disempowered in healthcare settings. She began to feel particularly dehumanized after a two-week hospitalization in 2013, and the subsequent flurry of frequent procedures and appointments. After developing symptoms of PTSD following that hospitalization, she started taking steps to help her to reclaim her humanity and individuality in the face of continued interaction with the dehumanizing medical environment - including documenting her experiences by taking and sharing "selfies" on social media. To learn more about her photography project to counteract the invisibility she felt, and the positive impact that feeling more empowered had on her healthcare, visit her write-up here.