I don’t see myself in the things being talked about. - Isra Amsdr

Converging art and healthcare—where care is rooted in persistence and made possible with resistance—the rare disease reality unfolds. I don’t see myself in the things being talked about. narrates the visceralities of being a rare disease patient, focusing on the fragments often kept behind closed doors. It provokes divergence between the self and the system—disclosing struggles with systemic underliers, as opposed to individual problems—conceding the universal desire for humanity that is present within all of us.

The longing desire to be seen as worthwhile of receiving care in a system that refuses to acknowledge the rare disease experience has been a source of all-consuming hurt and ache – one that at times has been gut-wrenchingly paralyzing, but once harnessed, has become the most powerful catalyst for change. One that has catalyzed my desire to propel change. Such a realization and the persistent resistance to accept the current norm of care for rare disease patients has been made possible with recurrent reminders to dream by the those who have graced my life, and patched me up with the humanity that’s been drained of me from unrelenting interactions with the healthcare system. In extension, the rare disease experience becomes felt by those around me. As a parallel, the participatory works present inviting the viewers engagement, offer a comparable exchange. Triggered from suffering, but made possible by dreaming – the likewise longing to be met with parallel humanity from the system, and to see the rare disease experience reflected in the world around us, underlies the works present.

I don’t see myself in the things being talked about. articulates the dire and at times suffocating rare disease life, but it grasps onto hope for dear life, and treads with relentless pursuit for the life rare disease patients deserve. While coming to terms with the inability to undo trauma and hurt – the belief that the world can be better for rare disease patients undermines the harmful narratives embodied as a result of the system. We cannot let a system not made for us make us feel like the world is not made for us.