Welcome – This Session Focuses On: Masks, Myths and Invisible Disabilities The masks people with invisible disabilities wear in education and work settings and myths surrounding invisible disabilities, with a focus on chronic conditions. Session Goals: 1. Increase participant confidence in communicating about disabilities. 2. Identify organizational best practices that foster equity, inclusion and understanding.

What is an invisible or hidden disability? ID - Physical, mental or neurological condition that limits a person’s movements, senses or activities that is invisible to the onlooker. Disability – An impairment that substantially limit(s) or restrict(s) a major life activity such as hearing, seeing, speaking, walking, breathing, performing manual tasks, caring for oneself, learning or working. IDs can involve– Severe & different types of chronic pain, fatigue, cognitive issues, organ impairment, dietary restrictions, movement difficulty – issues may emerge/re-emerge/change depending on the condition

Disability Data 2016 Prevalence in MN – 10.9%, approx. 600,000 Minnesotans 2018 Prevalence in US – 12.8% $29,600 difference in median income – household income with disability Over 20 definitions of disability for purposes of accessing support, services, inclusion in statistics Comparison to “average” is a standard that can be used to define whether or not something may be considered a disability The term disability is not an agreed upon term, from an equity perspective

Journey and Perspective

Faces of an Invisible Disability ABC News - Venus Williams’ Diagnosis More than Fatigue

Issues in Education and Work Settings -Disclosure – complex decision (reaction, perception, expectations) -Self esteem -Isolation -Effort involved in condition management -Attitudes/actions focusing solely on compliance may prevent learning and equity perspective --“what if we tried” “where can we learn” from “if only they” to “what could we” Sharing: What do you see or what have you experienced? What questions or insights would you like to share on this topic?

Masks The “fine” mask The “same” mask The “no limits” mask

Myths The control myth – if they would just… The you get to be lazy when you are sick myth The be more positive myth The miracle cure myth

Suggestions for Support and Conversations Listen & ask a few open ended questions (that’s it, literally!) Acknowledge – that sounds really hard Be open to people changing over time Avoid hidden expectations Respect differences in comfort with disclosure and changes in comfort with disclosure at different points in time Try to pause before issuing treatment advice Explore enhancements based on research -- wellness, universal design, mindfulness practices

Sharing: What has worked in your colleges and universities to create a more equitable and inclusive environment for students or colleagues? Resources: *Rebecca Cory - scholar *Landmark College - professional development *Do-It programs - universal design *The Mighty.com – self-help/community *Sjogrens.org – self-help/advocacy/providers

jill.abbott@minnesota.edu 218.846.3796 @JMabbott15