Jess Cuculick, MSW, MS.SEd Chair, Deaf Health Community Committee (DHCC)

Rochester Prevention Research Center:National Center for Deaf Health Research (NCDHR)Partnering with members of the ASL community: a linguistic minority group Jess Cuculick, MSW, MS.SEd Chair, Deaf Health Community Committee (DHCC) A Community Committee of NCDHR Matthew Starr, MPH Communication Team Leader NCDHR Deaf Health Community Committee A Community Committee of NCDHR

Objectives for Today • Increase awareness of barriers to health information and services • Gain basic understanding of Deaf culture, ASL & perspectives • Partner with the Deaf Community Deaf Health Community Committee A Community Committee of NCDHR

Health Data White Americans African Americans Deaf Americans Cancer 193.9 per 100,000243.1 per 100,000 No data Diabetes 23.0 per 100,00049.2 per 100,000 No data Infant Mortality 5.7 per 1,000 live births13.3 per 1,000 live births No data Adult Immunization 70.2 % 52% No data Source: www.cdc.gov Deaf Health Community Committee A Community Committee of NCDHR

Exclusive Practices • No systematic and routine collection of data on ASL use in the general population • US Census • Rely on estimates • Interpreting Services • Telephone Relay Services • Deaf-focused Organizations • Deaf Schools & Colleges Deaf Health Community Committee A Community Committee of NCDHR

Communication inaccessibility and insensitivity in healthcare settings • More difficulty communicating with physicians than hearing patients • Low “fund of information” • Unfamiliarity with family health histories • Health disparities suspected • Most deaf children do not participate in their own healthcare Deaf Health Community Committee A Community Committee of NCDHR

The Deaf Community: An Overlooked Population • Very little or no data about Deaf Health • Health surveys are typically done by telephone or in print • Deaf people are not usually targeted in health surveys (i.e., BRFSS, YRBS, etc.) • Deaf community is a cultural & linguistic population Deaf Health Community Committee A Community Committee of NCDHR

Rochester Prevention Research Center: NCDHR • Sponsored by Centers For Disease Control and Prevention • Goal is to promote health and prevent disease at the community level • Prerequisite: • Center must partner with specific community in all phases of research program (CBPR) Deaf Health Community Committee A Community Committee of NCDHR

Rochester Prevention Research Center: NCDHR • NCDHR is the first of its kind nationally • National External Advisory Committee • Deaf Health Community Committee (DHCC) • Town Hall Meetings • Staff members who are members of the Deaf Community • The ASL Community is a partner Deaf Health Community Committee A Community Committee of NCDHR

DEAF-WORLD • ASL is the primary language used • No barriers • No power inequities • Shared culture values, mores and goals • Members socialize/espouse each other • Some hearing people are members too! Deaf Health Community Committee A Community Committee of NCDHR

The Deaf community is not homogenous Each of these groups has very different communication needs and cultural distinctive Deaf Health Community Committee A Community Committee of NCDHR

American Sign Language • A visual language created by Deaf people • Neither written nor spoken language • A fully developed, natural language which has no grammatical relationship with English • Not a universal sign language Deaf Health Community Committee A Community Committee of NCDHR

ASL Use in North America • Deaf Americans and Canadians • CODAs (Children of Deaf Adults) • Hearing spouses • Siblings • Hearing parents who may have learned ASL • ASL interpreters Bottom line: ASL use may not necessarily mean the user is Deaf Deaf Health Community Committee A Community Committee of NCDHR

Culturally Sensitive Terminology Deaf Health Community Committee A Community Committee of NCDHR

Perspectives • Medical Model • Cultural Model • The Deaf people do not view themselves as “disabled” • US government policy focuses on public health & social welfare, and leaves unrecognized social or linguistic issues Deaf Health Community Committee A Community Committee of NCDHR

HHS Office of Minority Health • To improve and protect the health of racial and ethnic minority populations • Eliminate health disparities • Mandated by the Congress in 1994 Deaf Health Community Committee A Community Committee of NCDHR

Americans with Disabilities Act (ADA) • Rochester (NY) is ahead, many parts of country are behind • Accessibility Law • Exempt: Private Clubs and Religious Organizations • Unfunded Mandate • Some progress • Amendment Act of 2008 • Future thinking: Universal Design Deaf Health Community Committee A Community Committee of NCDHR

“ The problem is not that the students do not hear. The problem is that the hearing world does not listen. ” The Rev. Jesse L. Jackson Deaf President Now! Gallaudet University, 1988 QUESTIONS? Deaf Health Community Committee A Community Committee of NCDHR

Jess Cuculick, MSW, MS.SEd Chair, Deaf Health Community Committee (DHCC)