IDRAC 2019

Virtual Ability, Inc.® presents the 8th Annual International Disability Rights Affirmation Conference (IDRAC), November 1-2, 2019.

This is an annual professional conference held online, that is free and open to the public.

The conference will take place in Second Life® at The Sojourner Auditorium on Virtual Ability Island.

The conference will also be Live Streamed on YouTube.

This year’s theme is “We help each other, we help ourselves”. This theme is broad and open to interpretation by the presenters we invited to this year’s event. If past conferences are any indication, we look forward to lively discussions and information sharing among presenters and our very interested and interactive audience.

Below is an at-a-glance schedule of the presenters who will share their observations of the progress, benefits and challenges in disability rights in different parts of the world as applied to the current theme. We will provide more information about the speakers and their presentations as it becomes available. Note: All times are listed in US Pacific Time.

IDRAC 2019 Schedule of Events

All times are in SLT/PDT.

Friday, November 1
Time	Name	Institution	Title
7:00 AM	Mari Kimura and Lynne Gauthier	PCORI	The Patient-Centered Outcomes Research Institute (PCORI): Mission and Successes
8:30 AM	Arleen Ionescu and Anne-Marie Callus	Shanghai Jiao Tong University, University of Malta	Reading the Personal and the Social in Disability Studies and Trauma Studies
10:00 AM	Catalin Brylla	University of West London	Disability and Media Representation
11:30 AM	Celene Highwater		How the Blind Access Second Life
1:00 PM	Nohemi Lugo and María Elena Melón	Tecnologico de Monterrey, Mexico	The representation of autism in the narratives of fanfiction.net: Affinity spaces as an opportunity for the negotiation of meaning

Saturday, November 2
Time	Name	Institution	Title
6:30 AM	Alyssa Hillary, Rob Castellanos, and Kirk Munsch	Blogger and advocate, Syndio Health, Rare Patient Voice	Panel Discussion: "Hearing Our Voices"
8:00 AM	Video and Discussion		Video: “The Bench”
9:00 AM	Fleur Heleen Boot	Radboud University Medical Centre, the Netherlands	Which factors influence access to assistive products for people with intellectual disabilities?
10:30 AM	Sunil Deepak	AIFO, Italy	Challenges and Opportunities in Community-based Rehabilitation and Emancipatory Disability Research
Noon	Katherine Breward	University of Winnipeg	Disability Accommodation and Intersectional Identities: Evidence for Differential Requesting and Accommodation Rates
1:30 PM	Lydia X. Z. Brown	Advocate	The Autistic People of Color Fund: Building Networks of Mutual Aid by/for Negatively Racialized Autistic People

IDRAC 2019 Speaker Biographies

Biographies are listed in alphabetical order by last name.

Speaker	Biography
Fleur Heleen Boot	Fleur Heleen Boot is an Intellectual Disability Physician and a Researcher in The Netherlands. Her research projects have a focus on improving access to healthcare and assistive products (technology) for people with intellectual disabilities in differently resourced settings. Countries she has worked in include India, South Africa, Ireland, The Netherlands, and Chile. Her specific interests are Intellectual Disability, Global Health, Health Inequity, Access to Healthcare, Assistive Technology, and Inclusion.
Katherine Breward	Katherine Breward is an Associate Professor at the University of Winnipeg. Her research is centered around labour market access for historically disadvantaged populations, with a particular focus on best practices in disability accommodation. Her research has appeared in the Canadian Journal of Disability Studies, the Journal of Immigrant and Minority Health, the Case Research Journal, and Equality, Diversity, and Inclusion: An International Journal. Dr. Breward is also a strong advocate of case-based teaching and an award winning case writer. She teaches a range of HR related courses, including her signature course “Leadership and Fairness in Complex Organizations”. When not working Dr. Breward enjoys spending time on her 25 acre berry orchard with her husband and a menagerie of pets and reading inclusive science fiction and fantasy.
Lydia X. Z. Brown	Lydia X. Z. Brown is a disability justice advocate, organizer, attorney, educator, and writer whose work has largely focused on violence against multiply- marginalized disabled people, especially institutionalization, incarceration, and policing. Lydia is 2018-2019 Justice Catalyst Legal Fellow at the Bazelon Center for Mental Health Law, defending and advancing the educational civil rights of Maryland students with psychosocial, intellectual, and developmental disabilities facing disproportionate discipline, restraint and seclusion, and school pushout. Lydia is also Founder and Co-Director of the Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment, which provides direct support and mutual aid to individual autistic people of color. Previously, Lydia designed and taught a course on disability theory, policy, and social movements as a Visiting Lecturer at Tufts University. They were also Chairperson of the Massachusetts Developmental Disabilities Council, becoming the youngest appointee ever to chair any state developmental disabilities council. Lydia is co-editor and visionary behind All the Weight of Our Dreams, the first-ever anthology of writings and artwork by autistic people of color and otherwise negatively racialized autistic people, published by the Autistic Women & Nonbinary Network. They have received numerous awards for their work, including from the White House, American Association of People with Disabilities, and Society for Disability Studies, and written for several community and academic publications.
Catalin Brylla	Catalin Brylla is Senior Lecturer in Film at the University of West London and holds a doctorate in Media and Communications from Goldsmiths, University of London. His research aims for a pragmatic understanding of documentary spectatorship with regards to social cognition, stereotypes, experience, empathy and narrative comprehension. In a larger context his work also advocates for the filmmaker's understanding of how audio-visual and narrative representation impacts on society's understanding of stigmatised groups, such as disabled people, women and African cultures. He has published two edited books, "Documentary and Disability" (with Helen Hughes) and "Cognitive Theory and Documentary Film" (with Mette Kramer), and he has directed the feature documentary "Zanzibar Soccer Dreams" (with Florence Ayisi).
Anne-Marie Callus	Anne-Marie Callus is Senior Lecturer at the Department of Disability Studies, Faculty for Social Wellbeing, University of Malta. Her main research interests are the empowerment of persons with intellectual disability and cultural representations of disability. She lectures on these topics as well as on inclusive education and the rights of disabled persons.
Rob Castellanos	My name is Rob Castellanos and I'm a patient living with Ankylosing Spondylitis, OCD, and Anxiety. Traditional healthcare gave me 5+ years of misdiagnoses and years of seeking what could help me manage my conditions. What changed my life was learning what I could do from people in the same shoes as me. This prompted me to quit my job and found Syndio Health, an online health community for sharing real knowledge and experience with chronic illness.
Sunil Deepak	I am Sunil Deepak, a medical doctor, originally from India and living in a small mountain town in Italy. For about 35 years, I have worked as trainer, facilitator and researcher in disability programs in different countries of Asia, Africa and South America. I have worked with different agencies of United Nations such as World Health Organization (WHO) and United Nations High Commission for Refugees (UNHCR), as well as with many humanitarian organizations. A key area of my work is about how to simplify specialized knowledge and make it easier to understand to non-professionals.
Lynne Gauthier	Dr. Lynne Gauthier is an Associate Professor in the Department of Physical Therapy and Kinesiology at The University of Massachusetts Lowell and director of the Neurorecovery and Brain Imaging Laboratory. Her research utilizes new motion capture technology and data analytics to derive personalized insights into motor recovery. She also utilizes advanced neuroimaging approaches to better characterize the brain’s response to various motor interventions. Her laboratory has secured 7 years of continuous funding from competitive institutes, including PCORI and the American Heart Association. Dr. Gauthier co-chairs the Neuroplasticity working group for the American Congress of Rehabilitation Medicine.
Alyssa Hillary	Alyssa Hillary is an Autistic PhD 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.
Arleen Ionescu	Arleen Ionescu is Professor at Shanghai Jiao Tong University. Her major research and teaching interests are in the fields of Critical Theory, Memory Studies, Holocaust Studies and Trauma Studies. She has published widely on trauma. At present, she is co-editing with Maria Margaroni (University of Cyprus) a volume entitled Arts of Healing: Cultural Narratives of Trauma (forthcoming 2020)
Mari Kimura	Mari Kimura is a Program Officer in the Healthcare Delivery and Disparities Research program at the Patient-Centered Outcomes Research Institute (PCORI). Her portfolio includes studies aimed at addressing health and healthcare disparities in vulnerable populations, including people with disabilities.
Nohemi Lugo	Nohemi Lugo is a researcher and professor in the Media and Digital Culture Department at Tecnológico de Monterrey, Queretaro Campus in Mexico. She holds a Bachelor's Degree in Communication from Tecnologico de Monterrey, a Master in Arts by Western Michigan University and a PhD. in Communications by Pompeu Fabra University. Her research connects digital culture studies with an ethnography and design methodology approach. Her goal is to design and develop methods, processes, materials and technologies intended to foster education, social inclusion and health. Currently, she is writing a book about digital culture and informal learning strategies for children with autism. She coordinates a research project about digital culture and mobile devices use of children with disabilities. She coordinates another project for mothers of children with autism to learn from experiences of other mothers who have experienced disability for longer time through collective storytelling and an on-line course.
María Elena Melón	María Elena Melón is a fulltime professor in the Department of Art at Tecnológico de Monterrey, Queretaro Campus in Mexico. She holds a Computer Science Master Degree and is specialized in physical interfaces and interactive media applications. She has participated in two research and technology grants given by Tec de Monterrey to create alternate reality games and a virtual reality platform to learn to operate industrial design equipment. Currently she is participating in two research projects related to Autism.
Kirk Munsch	Kirk Munsch is the Patient Advocacy Manager for www.rarepatientvoice and a Primary Progressive MS patient. Kirk 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.