IDRAC 2019: November 2 @ 6:30 am SLT, Hearing Our Voices

Rob Castellanos

Alyssa Hillary

Kirk Munsch

Historically, persons with disabilities and illnesses were hidden away from the rest of their community, either at home or in institutions. Now, we are beginning to realize the importance of telling our life experiences so that everyone recognizes our common humanity.

One way we let others hear our voices is through publication (blogging, vlogging, Facebook, podcasts, self-published or professionally published memoirs, articles and books). Another way is by participating in patient registries, which are collections of information provided by persons with similar diagnoses, symptoms and concerns. These registries support research and lead to improved understanding of and support for the quality of life of those living with disabilities and illnesses.

Panelists for this session are Rob Castellanos, Alyssa Hillary, and Kirk Munsch. The panel moderator will be Shyla the Super Gecko. The panelists will tell about their work and its importance to the overall disability community. Then they will respond to questions from the audience.

Rob Castellanos is a patient living with Ankylosing Spondylitis, OCD, and Anxiety. Traditional healthcare gave him 5+ years of misdiagnoses and years of seeking what could help him manage his conditions. What changed his life was learning what he could do from people in the same shoes as himself. This prompted him to quit his job and found Syndio Health, an online health community for sharing real knowledge and experience with chronic illness.

Alyssa Hillary is an Autistic Ph.D. student in the Interdisciplinary Neuroscience Program at the University of Rhode Island. Depending on the moment, they study brain computer interfaces, augmentative and alternative communication, neural engineering, and/or disability studies. Their work can be found in several Autonomous Press anthologies, and they blog at yesthattoo.blogspot.com.

Kirk Munsch is the Patient Advocacy Manager for Rare Patient Voice and a Primary Progressive Multiple Sclerosis patient.  He is passionate about connecting patients and their non-paid caregivers (family and friends) to projects where they make their voices heard to shape products and services being developed on their behalf.

This event will be live-streamed via Virtual Ability Inc.'s YouTube channel:
https://www.youtube.com/channel/UCecFbqrNpnAbfaEohz8HIhQ/live.