The prevalence of HIV disease among the deaf and hard of hearing in the United States is greater than among the general population. Despite improved access to services -- in large part through the Americans with Disabilities Act -- the deaf and hard of hearing are at risk for poor access to society's educational, religious, and social institutions. Moreover, there appears to be a shortage of prevention and care providers equipped to serve this population effectively. Inadequate access to health care combined with a shortage of culturally competent providers results in poorer health status and quality of life for many individuals who are deaf or hard of hearing.
The American Social Health Association estimates that about 28 million individuals in the United States are hearing impaired -- approximately 10 percent of the U.S. population. Worldwide, about 70 million individuals have a hearing problem.
Deafness is a hearing loss that precludes the learning of language through hearing.1
Hard of Hearing describes hearing loss that, although serious, is less severe than deafness and usually permits understanding of spoken language through hearing aids.
Hearing Impairment refers to all degrees of hearing loss, from slight to profound.2
People who are deaf may have some hearing -- perhaps enough to hear some sounds in the environment -- but not enough to understand speech. They primarily rely on vision for watching sign language, lip-reading, reading, and drawing.
Hard of hearing people first rely on their hearing and reinforce it with their vision. Even someone with a mild hearing loss may miss 50 to 70 percent of what is said, so the degree of hearing loss alone does not indicate the level of difficulty an individual may have in understanding spoken language.
Deaf and hard of hearing individuals have a wide range of hearing impairments, come from all walks of life, and represent a variety of backgrounds and circumstances. Yet, they comprise a distinct culture and share many common values and concerns.
Seventy-five percent of the deaf and hard of hearing in the United States use the country's third most common language, American Sign Language (ASL). English is their most common second language, which they read on a 4th grade level, on average.
Many Americans are unaware of deaf culture, and think of the deaf and hard of hearing only in terms of hearing disability. Identity is formed by a multitude of factors, of which hearing status is just one. As one writer has said:
A deaf African American male is deaf and African American and male. His identity is influenced by his religion, sexual orientation, and a host of other characteristics. How these factors combine to create the individual is unique. Thus, it is important to do away with stereotypes and acquire knowledge about the deaf and hard of hearing -- about all individuals -- based on facts.
ASL is by far the most effective means of communicating with the deaf, but Pidgen Signed English, Cued Speech, gesturing, drawing, lip reading, and signed English are also used among some individuals.4
Because members of the general public often assume that the deaf read and write English without difficulty, a great deal of important information is never translated appropriately and thus never communicated. Consequently, the deaf and hard of hearing find themselves frustrated and confused as full participation in a predominately hearing society is difficult, with much of the hearing world entirely oblivious. Lack of communication increases risk for a host of problems for the deaf and hard of hearing, including poverty, lack of education, disenfranchisement, and poorer health.
Between 8,000 and 40,000 deaf and hard of hearing individuals are living with HIV disease in the United States, according to the Centers for Disease Control and Prevention. This wide range is based on two limited studies, one indicating a seroprevalence rate of slightly less than 1 percent and the other of about 5 percent. A well-known Maryland study based on test results at federally funded counseling and testing centers yielded a 4.3 percent rate; however, these data do not present a complete picture since federally funded counseling and testing sites historically account for no more than 12 to 15 percent of all HIV-positive test results.
Since 1998, the CDC has evaluated medical records in 11 cities to estimate HIV prevalence among the deaf and hard of hearing, but to date no wide-scale seroprevalence study has been conducted. Whatever the exact number of deaf and hard of hearing individuals living with HIV disease, there is little question that seroprevalence among this minority is higher than among the general population.
As early as 1992, experts estimated that the deaf population was about 8 years behind the hearing population in HIV knowledge and awareness.5
The Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals is a leading provider of services to the deaf and hard of hearing. The agency recently conducted a risk assessment among 250 subjects, about 22 percent of whom were program patients. The remainder were from the community at large. Only 15 percent of respondents from the community demonstrated knowledge of HIV transmission facts.6
Deaf high school students have a much lower knowledge level about HIV transmission than do their hearing counterparts. The gap is narrowed somewhat among college students, but it still exists.7 These data give evidence to the shortage of appropriate prevention materials and communication strategies.
The number of HIV infections among the deaf and hard of hearing transmitted through heterosexual or same-sex sexual contact is unknown. Likewise, it is not known how the proportion of total cases resulting from sexual contact differs from that for other populations.
Advocates caution that the messages required to reach unique population groups are as diverse as the populations themselves. Surveillance data on other communities, e.g., African Americans and Latinos, seem to reveal that messages targeting one group, for example "out" gay white men, will not reach minorities who embody different values and cultural norms.
One in seven deaf persons has a history of substance abuse, compared to one in ten in the hearing population.8 The high prevalence of substance abuse among the deaf and hard of hearing may be associated with the host of problems described above. Additionally, children with disabilities, including those who are deaf or hard of hearing, are at much higher risk for sexual abuse than hearing children, and childhood sexual abuse is an indicator for substance abuse as an adult.9
According to the Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals:
"Many individuals in Deaf communities have not had access to the recent widespread efforts to educate people about the dangers of drug use and abuse. Public service announcements have often not been closed-captioned. Education and prevention curricula in the schools have not accommodated the communication skills of deaf or hard of hearing children and have been insensitive to their culture."10
The deaf and hard of hearing are protected under the Americans with Disabilities Act of 1990. With specific regard to medical treatment, the legislation provides a variety of accommodations such as TTY access, signal lights that are used to visually display fire alarms, doorbells, and closed captioning services. Unfortunately, providers do not always comply with these provisions.
The U.S. Department of Health and Human Services recently sponsored the National Meeting for the Deaf and Hard and Hearing Community. The HIV/AIDS Bureau participated in the event. The meeting was held in a Federal office building, where entry typically requires some combination of photo identification, voice authorization, and being listed on a roster. The process is cumbersome at best. The difficulty encountered by non-hearing individuals attending the national meeting attempting to trouble-shoot the system is emblematic of the multitude of barriers they face when seeking to access society's most fundamental institutions.
How is a deaf person to enter a building that uses an intercom system to confirm identity? How is that individual to receive directions to a medical facility when so few own a single TTY machine? How were 75 meeting participants, the majority of whom stayed at a single hotel facility, to communicate with the outside world when the hotel owns one TTY machine?
The shortage of culturally competent providers is reflected in the dearth of culturally appropriate prevention and treatment education materials. The under-supply of useful materials results in individuals not understanding HIV disease. They remain unaware of the differences between HIV and other sexually transmitted diseases, do not comprehend basic treatment concepts, and may not understand the full import of an HIV-positive test result. Advocates speak with one voice about teaching individuals about HIV prevention and treatment: the best method for communicating with the deaf and hard of hearing is through graphics, photographs, and diagrams.
Advocates report that health care providers are less likely to offer HIV screening to the deaf and hard of hearing than to their hearing clients. Likewise, they report a lack of cultural competency among providers of medical care and support services, noting that many do not understand the effects of culture on how individuals process information, make decisions, and live their lives.
Lack of access to interpretation services appears to be a systemic problem. Many providers do not comprehend when interpretation services are needed. They assume that the deaf and hard of hearing have mastered the English language, or that medical terms are easily translated into ASL. They do not understand that most individuals who have learned a second language -- in this case, English -- often are reluctant to use it, especially in stressful situations.
Financial resources for providing interpretation services are often in short supply. Organizations providing HIV/AIDS services have limited funds. Planning bodies allocating funds for services face difficult decisions, knowing that the need for services far out-weighs the availability of resources. The shortage of trained and effective advocates for the deaf and hard of hearing -- and for others needing interpreters -- compounds the problem and perpetuates the undervaluing of interpretation services.
A shortage of qualified interpreters exists in many areas. The shortage is likely to continue unless financial resources for procuring these services are increased and unless the relationship between interpretation services and health status becomes more widely understood.
The deaf and hard of hearing often have no choice but to seek HIV/AIDS services from organizations that are unfamiliar to them. These organizations may be unprepared to serve this population, just as many AIDS service organizations established to serve white, "out" gay men lack the cultural competency and trust within the community to serve women, minorities, and others.
The difficulty of accessing services offered by culturally incompetent organizations is compounded by the challenges of negotiating the maze of insurance and entitlements requirements. Availability of interpretation services can help. But, are those services going to be available if deaf and hard of hearing individuals cannot effectively advocate for them?
At the close of the recent DHHS-sponsored meeting on HIV disease in the deaf and hard of hearing, participants identified a set of fundamental issues that must be addressed if reductions in HIV incidence and AIDS mortality are to be achieved.
Experience has shown that affected populations must be involved in developing solutions to the epidemic among their own communities. The deaf and hard of hearing are no exception. Reducing the impact of HIV/AIDS among this population requires redoubled efforts by all those involved in the fight against the epidemic -- providers, advocates, policy makers, administrators, and members of the community. A comprehensive response that more accurately reflects the deaf and hard of hearing culture and all that it embodies, will help facilitate improvements in HIV incidence and AIDS morality among this population.