Non-Normative Communication in the Clinical Encounter: Considering Intellectual and Developmental Disabilities Jennifer C. Sarrett, PhD Emory University Center for the Study of Human Health Disability Studies Initiative

Aims of Talk Overview of people who communication non- verbally – Related disabilities Epistemic Injustice – Miranda Fricker Strategies – Respect – Flexibility – Disability friendly language

Non-Verbal Communication Does not mean no communication Related to: – Aphasias: 200,000 cases/per year, 60+ years old – People who are critically ill – Disabilities Intellectual/developmental disabilities ID: 9.1/1000 ( per 1000; Katusic et al. 1996) DD: 167/1000 (1 in 6; CDC, 2015) Autism: 18/1000 (1 in 68; CDC, 2014)

Little/no Calculations of Rates of Non-Verbal Communication Style Given these numbers, chances are good you will interact with this population Children with I/DD become Adults with I/DD

Clinical Encounters Based On

Respect Awareness of different models of disability – Medical Model: cure/fix disabled person – Social Model: social construction; disability in interaction b/t self and environment – Cultural Model: understood as part of culture, potential of disability as a state of being  cultural group

Epistemic Injustice Miranda Fricker, 2007 Epistemic justice faced by minority groups – Hermeneutical: injustice resulting from lack of shared social resources to make sense of experience – Testimonial: deemed incredible because of prejudice from outsiders

And I/DD? Difficulty sharing experiences – Segregation, distrust, monitoring – Communication barriers Thoughts/opinions not believed – Temple Grandin – Amanda Baggs: “In My Language” Amanda Baggs – Non-normative communication distrusted – Assumptions of incompetence, lack of insight

Neurodiversity From Disability Studies Human neurological variation natural part of human diversity – Acceptance rather than cure – Built from autistic community – Expanded to other disability groups

Take Home Message: Better to assume competence/understanding and be wrong than assume incompetence and be wrong

Flexibility Various communication tools you may encounter – ASL – PECS, Picture Exchange Communication System – Talk to text – iPad – Gestures – Writing – Surrogate/guardian

Tips/Strategies Be aware and accepting of self-regulation behaviors – Pacing, hand flapping Different ways to pay attention – Not always eye contact Speak….then wait – Be aware of overloading patients with language

Again…Assume Understanding Always speak to the patient Eva Kittay, 2011

“A dear caregiver joked in front of my daughter that the secret of her youthful appearance was that she had no worries, like paying taxes and bills. I countered by saying that Sesha has a lot to worry about, like not being able to scratch an itch, move out of an uncomfortable position, tell us what she wants, and so on. My daughter turned to face me, gave me an intense look, smiled broadly and reached out to hug me. I was startled, as were all who witnessed this response. Maybe she only grasped the tone, but it is no less possible, indeed plausible, that she understood the words. She has, after all, been listening to human speech for forty years.” (Kittay, 2011, p 622)

Disability Friendly Language Language of difference no deficit – Examples: “Non-verbal communication style” instead of “communication deficits” “Idiosyncratic interaction style” instead of “social deficits” “Significant disability” instead of “severely disabled” “Self-regulation behaviors” instead of “restricted and repetitive behaviors”

Questions/Comments? Thank you!