Today's episode is actually a "rerun" of one of my favorites from last year to mark Trans Day of Visibility. More new episodes to come soon, but I'm still recovering from the AHCA whirlwind. S. Leigh Thompson talks about the hurdles to diagnosis he's faced as a trans person with complex health issues, healthcare insecurity, getting around the city with mobility limitations, and navigating society with invisible disabilities.Read More
As a 2016 Stanford Medicine X ePatient Delegate on the Storyteller Track, I was tasked with creating three projects. I used this scholarship opportunity to learn from, compare notes with, and give voice to my fellow ePatients with Project UterX and The Stories We Tell. The third project, bgw for MedX, is a to return to my first love of visual art, while experimenting with new digital tools and exploring visual representations of pain. In this blog post, you can read all about my excellent adventure attending the MedX conference back in September 2016 at Stanford University School of Medicine.Read More
In today’s episode I talked to Erica Lupinacci about her health advocacy with HIV/AIDS and through Suffering the Silence, her own experience living with Lupus, media portrayal of chronic illness and disability, challenges she’ll face as an actor with a disability, doing everything right and still being sick, illness on social media, the nightmare of American health insurance, and traveling with an unpredictable illness.Read More
This week’s episode is one to honor Ehlers-Danlos Syndrome Awareness Month, as well as many of the other poorly understood, under-diagnosed conditions that disproportionately affect women, which share May as an awareness month. This episode is actually a re-run of my interview with Rebecca from episode 03, but with an updated introduction and new links on the episode page.Read More
In today’s episode, S. Leigh Thompson talks about the hurdles to diagnosis as a trans person with complex health issues, healthcare insecurity, getting around the city with mobility limitations, and navigating society with invisible disabilities. In the bonus episode we talk intersectionality, the spectrum of ability and access, disclosure, hormones, and the potential for allyship between the the trans and disability communities.Read More
In today’s episode we talk about some of what Soul has been through during faer childhood, including three skin expander surgeries following the removal of a birthmark on Soul’s head. Fae talk about those surgeries, being undermedicated most of that time, finding out about a codeine allergy the hard way, not realizing how traumatic it all was until later, and how that’s complicated the process of transitioning from pediatric to adult care. In today’s bonus episode, we talk about needle phobia and figuring out Soul was autistic late in faer teens.Read More
In today’s episode Cara talks to K about what is considered "normal" vs. "disordered" behavior, being non-gender, the intersection of fat hatred, sexism + ableism, embodying the fears of the able bodied, imagined expertise, and the dual reality of self diagnosis—especially for those living with difficult to diagnose conditions.Read More
In this week’s episode, Cara talks to former med student and current PhD candidate Cyrena about her experience pursuing higher education in the biomedical sciences, other ways to pursue related interests, what it’s been like to deal with both Bipolar Disorder and Lupus along the way, and the systemic ableism baked in to medicine and medical education.Read More
On this week’s episode, Cara talks to Dior Vargas, Latina feminist mental health activist, about her experiences with depression, suicide rates, and her People of Color with Mental Illness photo project. In honor of Festivus, Cara airs some grievances about medication and its place in our culture, and the false division between mental illness and physical illness. She talks about the Feats of Strength required to make it through the holiday while living with chronic illness, and they discuss getting help, media representation, and how Dior got invited to the White House.
Cara and Rebecca invite you to challenge some of what you think you know about disability, and the cultural messages we get about what a Disabled Person is. They discuss self advocacy, Rebecca's work toward better accessible transit options for Philadelphia and plans for a queer disability justice project, diversity of disability, and some of the social and economic issues that face the chronically ill and people with disabilities. At the end they talk about what they worry about, SSDI, and Imposter Syndrome.Read More
In today’s episode, Rebecca talks about the ups and downs of EDS, their long and winding diagnostic process, working 10x as hard to be half as healthy as everyone else, and redefining their value while not being able to work a paying job.
Next week I’ll be posting part two, where we talk about Rebecca’s advocacy work toward accessible transportation in Philadelphia, some of the social and economic issues facing the chronically ill and people with disabilities, reconceptualizing disability internalized ableism, and diversity of disability.
They live with Ehlers-Danlos Syndrome (EDS), dysautonomia including POTS, Mast Cell Activation Syndrome, gastroparesis, and several other diagnoses.Read More