Health access, health disparities and health literacy are buzz words within our rapidly changing health care landscape. Even though one in seven Maine people are estimated to have a hearing loss, data collection efforts regarding access, disparities and literacy for people who are Deaf and hard of hearing trail far behind efforts related to other populations.
National and local health surveys - including the Center for Disease Control and Prevention's (CDC) Behavioral Risk Factor Surveillance System (BRFSS), a telephone survey which is administered annually to thousands of hearing persons in the U.S. - have not been conducted in American Sign Language (ASL). In fact, few health researchers even know ASL. Consequently, little community-based data have been collected on health risk behaviors of Deaf adults and teenagers. Even though the CDC defines deaf people as a vulnerable population, we do not know which preventable diseases are common among Deaf people, or what are effective strategies for preventing disease and improving physical and mental health among people who are Deaf or hard of hearing.
The Deaf Health Survey, conducted by researchers at the University of Rochester School of Medicine (URSOM) is a notable exception in this data desert. Rochester, New York has a large Deaf population because of the presence of area schools for the Deaf. In 2006, the county in which Rochester is located conducted a BRFSS survey using the usual approach- hearing only. The exclusion of Deaf and hard of hearing people from the survey led to the creation of the National Center for Deaf Health Research (NCDHR) at URSOM, a unique CDC Prevention Research Center utilizing community-based participatory research, including survey questions translated into ASL and presented through videos.
In 2011, researchers released the results of the survey- the first time a Deaf community has used its own data to assess its health status. The results?
NCDHR used the results of the survey to create specialty weight loss programs, host monthly Deaf Health Talks in ASL, conduct suicide and intimate partner violence studies, and, importantly, provide training programs for Deaf people to become medical and mental health professionals. Data showing that people who use ASL had scant information about influenza -- a topic well known to the general public- led to the creation of ASL videos about seasonal flu, now available nationwide.
What data do we have on the health status of Deaf people in Maine? Unfortunately, none. Advocates, community partners and deaf consumers know from experience that there are no specialty medical services or nursing care facilities that provide linguistically accessible and culturally appropriate services. Maine has no medical providers fluent in ASL. Of the 67 certified sign language interpreters in Maine, none are located in Aroostook, Piscataquis, Waldo, Knox, Franklin, or Washington Counties. A recently graduated registered nurse who is deaf applied for 55 nursing jobs in Maine and was not offered a single interview.
We need to have better information on the health status and disparities that Deaf people face in Maine. More immediately, there are actions that all of us can take to lessen the disease burden and care limitations for Deaf and hard of hearing people in our state. Here are some suggestions:
Note: the drawing accompanying this post was done by Johannes Fellinger, M.D. of the combined effects of increased disease burden and care limitations.
Meryl C. S. Troop is the Civil Rights Program Manager for Maine Center on Deafness, a certified ASL interpreter with much experience interpreting in medical settings, adjunct faculty at Southern Maine Community College teaching Medical Interpreting to spoken language interpreters, and a member of MeHAF’s Community Advisory Committee.
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