Deaf Health Community Committee A Community Committee of NCDHR

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

African AmericansWhite Americans

Cancer 193.9 per 100,000 243.1 per 100,000 No data

Diabetes 23.0 per 100,000 49.2 per 100,000 No data

Infant Mortality 5.7 per 1,000 live births 13.3 per 1,000 live births No data

Adult Immunization 70.2 % 52% No data

Source: www.cdc.gov

Deaf Americans

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

ASL Users (Culturally Deaf) Oral deaf Hard-of-hearing Late-deafened With Cochlear implants Deaf-Blind Deaf with additional disabilities

National Association of the Deaf (1880) Deaflympics (1924) World Federation of the Deaf (1951) Rainbow Alliance of the Deaf (1977) National Black Deaf Advocates (1982) Deaf Women United (1984) National Council of Hispano Deaf and Hard of Hearing National Asian Deaf Congress (1994) Intertribal Deaf Council (1994)

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 spousesSiblingsHearing parents who may have learned ASLASL 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

Inappropriate Appropriate

Hearing Impaired

Deaf-Mute

Deaf and Dumb

Deaf

Hard-of-Hearing

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 2008Future 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. JacksonDeaf President Now!

Gallaudet University, 1988

QUESTIONS?