Monday, December 18, 2006

Services available in San Francisco

Deaf AIDS Support Services (DASS)
If you have HIV or AIDS, and you are Deaf, Hard-of-Hearing, or have some hearing loss in the San Francisco Area, Deaf AIDS Support Services can provide support services. These services can be provided at our San Francisco office, in a medical setting, or in your home. In general, services include practical support, case management, counseling and communication support. DASS also provides training for professionals and community providers about HIV and hearing loss.

Most of these services are only available for San Francisco residents. Culturally sensitive counseling services are available to anyone, depending on their insurance coverage

Did you know?
HIV infections and some medications used by people with HIV can cause hearing loss or
make hearing loss worse.

Services include:
  • Individual, couples, and family counseling
  • Case management
  • Referrals to other programs to meet your specific needs, including practical support
    with food shopping, or rides to medical or other appointments.
  • Communication and interpreting services for HIV-related services and activities.
  • Loan program for assistive listening devices such as doorbell/light system, and
    amplification listening equipment.

    School-Based Partnership Programs
    The Partnership Program is a school-based mental health and school consultation program targeting Deaf and Hard-of-Hearing students. The Partnership Program works in partnership with students, families, and teachers with the goal of fostering academic, personal and social successes for Deaf and Hard-of-Hearing children and youth, and enhancing the strengths of students and their families towards improved communications.

    The first Partnership Program began in San Francisco in 1995 at a San Francisco Elementary School with classes for Deaf and Hard-of-Hearing students. In 1997, due to the success of the program, it was expanded to cover two classrooms at the same school site.

    In 2000, the program was expanded to San Mateo County through funding from Peninsula Community Foundation. The San Mateo Partnership Program works in collaboration with four public schools in San Mateo County, from Elementary through High School grades.

    Both programs continue to address the needs of Deaf and Hard-of-Hearing students, family members, and teachers. Services include individual and family counseling, crisis intervention, parent support groups, and consultation with school staff.

    In the fall of 2001, the San Mateo Partnership Program expanded to include infant and early childhood programs in San Mateo County through funding from Morris Stulsaft Foundation. These early intervention services include parenting groups, play/communication groups, crisis intervention, family community activities, and teacher consultation.

    This information and more is available at:
  • Saturday, December 16, 2006

    New website in French

    Coalition Sida des Sourds du Québec (CSSQ), in English the AIDS Coalition of the Deaf of Quebec, has a new French language website. CSSQ is in the forefront of the fight against AIDS in Deaf communities and a model for organizations everywhere.

    Friday, December 15, 2006

    Press Release from AIDS 2006 Conference

    The banner from

    On August 17, activists from the Deaf community and the community of people living with disabilties came together for a press conference on the issues of HIV/AIDS. People from Africa, North America and Latin America shared stories about how they were helping build programs fighting HIV/AIDS in Deaf communities and communities of people living with disabilities around the world. Although there is still far to go, there were many articulate advocates in the fight who described their work in Kenya, Nigeria, South Africa, Canada, the United States and elsewhere. I hope to provide short reviews of these biographies as well as profiles of leaders in the upcoming months but first wanted to post our press release on the subject.

    First released August 17, 2006, AIDS 2006, Toronto, Canada

    The International AIDS Society and World Federation of the Deaf must recognize and act upon the HIV/AIDS crisis among people with disabilities including Deaf people globally.

    • Deaf People are as or more likely to be HIV+ as hearing people but little information is kept on the problem and few resources are being directed towards prevention, testing or treatments for Deaf people.
    • 2003 statistics from Maryland (US) show Maryland Deaf people to be almost 11 times more likely to be HIV+ as hearing people (Schmaling & Monaghan 2006)
    • Statistics from Kenya show that Kenyan Deaf people have a similar incidence of HIV (7%) to the hearing population (Taegtmeyer, Henderson, Angala, Ngare 2006)
    • Deaf children in particular are at risk because of high rates of sexual and physical abuse of Deaf children related to the inaccessibility of information (J of Am Deafness and Rehab Assn 1992).
    • People living with disabilities in general are often at risk for abuse. For example, women with disabilities in Southern Africa are at a higher risk of rape than other women (Groce 2005).
    • Deaf people and people living with disabilities were not recognized as at risk at the AIDS 2006 convention, in the 2005 UNAIDS report, or in most global discussions of HIV/AIDS. No Key Speakers at AIDS 2006 on Deaf, hard-of-hearing, or disability issues.
    • Few sign language interpreters were available and the conference was unaccessible for people with physical and visual disabilities.

    • HIV/AIDS is a serious problem in Deaf communities and should be recognized as such. We need more information. Health departments should keep statistics on the hearing status (hearing, hard of hearing and deaf) for HIV programs and testing.
    • Need more money and resources for Deaf HIV/AIDS prevention and treatment programs.
    • Deaf communities must be part of all phases of design and implementation of programs.
    • Materials for Deaf people need to be in sign language or have lots of pictures.
    • Qualified, sensitive and appropriately trained interpreters provide lifelines to HIV services and treatments presented only in spoken or written language.
    • Peer-to-peer education works. We need many more programs.
    • IAS and other international organizations must include of people with disabilities and Deaf people in all aspects of the planning and execution of their conferences and programs.

    Groce, N. (2005) Lancet
    Schmaling, C., & Monaghan, L. (Eds.). (2006) HIV/AIDS and Deaf Communities. Coleford: Douglas McLean. [Deaf Worlds Focussed Edition, Vol. 22 (1).] Available at:
    Taegtmeyer, M, Henderson. K, Angala. P, Ngare, C (2006) Responding to the signs: A voluntary counselling and testing programme for the Deaf in Kenya. AIDS 2006 Poster MOPE0876.

    Sign Language & Deaf Culture Lesson Plan

    One problem activists often encounter is that hearing people don't believe that sign language is a language or that Deaf culture is a culture. Below are two versions of a one-class introduction to sign languages and Deaf culture.

    Version with live links:

    Version with links spelled out:

    Reinventing HIV/AIDS public health campaigns for the Deaf community: Addressing the role of barriers and stigmatization – Wendy Trafton

    A paper by Public Health Masters Student Wendy Trafton. Also available at:

    For more than 20 years, public health practitioners have developed campaigns to educate Americans about HIV/AIDS in an effort to prevent the spread of the disease. In January 2003, CBS Corporation, Viacom, and the Henry J. Kaiser Family Foundation launched a campaign entitled the “KNOW HIV/AIDS” initiative to create and disseminate information about HIV and its prevention through the use of television, radio, outdoor, online and print media. The mission of the campaign is to “use the power of media to educate and compel people to act – to protect themselves and get tested for the virus – and to erase the stigma for those afflicted (” Despite frequent television and radio campaigns and attention-grabbing billboards and print advertisements, this public health campaign has failed to change the behaviors and increase the knowledge of many deaf and hard of hearing Americans. In America, 600,000 persons are functionally deaf and 35,000,000 have self-reported hearing trouble (Mitchell). Because of barriers to education, stigmatization, and lack of a credible spokesperson, HIV/AIDS campaigns have failed to educate and promote safe behavior in the deaf and hard of hearing population.

    According to their website (, the KNOW HIV/AIDS campaign in the U.S. is aimed at the “public-at-large as well as those groups that are most at-risk for the disease, including youth, people of color, women, and men who have sex with men.” This list excludes deaf and hard-of-hearing people from the most at-risk population. Although limited statistical information is available on the problem of HIV/AIDS in the deaf and hard of hearing population, studies suggest that HIV/AIDS affects deaf people at a higher rate than hearing people. The Maryland Department of Health and Mental Hygiene collected data on HIV testing in 2003. During this time, 38,602 hearing people were tested in public facilities and 832 deaf people were tested. Among those tested, 813 hearing people were HIV+ and 38 deaf people were HIV+ (Monaghan). This data suggests that deaf people are two times more likely to be HIV+. When this data is analyzed using population figures, .015% of the general population tested positive and .17% of the deaf population tested positive (Monaghan). This suggests that deaf people may be 10 times more likely to be HIV+. Additional data should be collected across the United States to determine the prevalence of HIV/AIDS in the deaf and hard of hearing population. Although currently data is only available in Maryland, The KNOW HIV/AIDS campaign should include deaf and hard-of-hearing people in their definition of most at-risk population.

    Public health campaigns will not change a person’s behavior if the campaign is solely based on disseminating information. In fact, the adoption of health-enhancing behavior is “a function of the level of knowledge, attitudes and skills that the person possesses in relation to the health risk and the extent to which individual or socioenvironmental incentives or barriers exist that facilitate or inhibit ceasing the risky behavior (Egger, pg. 29).” For deaf and hard of hearing people, many barriers prevent education and socioenvironmental disincentives, such as stigma, prevent health-enhancing behavior. By utilizing a trusted spokesperson and framing campaigns using Deaf norms and values, public health campaigns can create socioenvironmental incentives for getting tested and protecting oneself from HIV. In order to prevent HIV/AIDs in the deaf community, practitioners must work with the deaf community to provide education about HIV prevention, remove physical, cultural and systemic barriers, and create campaigns using trusted and respected sources in the deaf community.

    Barriers to Education and Protection

    Many barriers prevent deaf and hard of hearing people from being exposed to HIV education. Additionally, factors within the social and physical environment prevent this population from making the behavior changes these programs are intended to promote. One physical barrier to obtaining information is a linguistic barrier. Deaf Americans communicate using American Sign Language (ASL). ASL is a unique, visual language with its own grammar and syntax. Many Deaf Americans are fluent only in ASL. Because the average deaf person has a 3rd grade reading level in English, print material is often inaccessible to them (Peinkofer, 392). The KNOW HIV/AIDS campaign created a 32-page educational pamphlet entitled, “Get Informed, Get the Facts about HIV/AIDS and other Sexually Transmitted Diseases.” This pamphlet is printed in English and is inaccessible to deaf people that are not fluent in English. KNOW HIV/AIDS has not created a version of their pamphlet in ASL for the deaf and hard of hearing population. Activists in South Africa recently created a comic book entitled, “Are Your Rights Respected?” using pictures and illustrations of South African Sign Language. KNOW HIV/AIDS could create similar educational media in America.

    In addition to print media, KNOW HIV/AIDS creates ads and public service accouncements (PSA). In 2006, all PSA’s used radio media, an inaccessible source for the deaf and hard of hearing. Television advertisements from 2003 – 2005 are viewable through However, none of the online advertisements are closed captioned for deaf and hard of hearing people that are fluent in English. The website and should provide captioned versions of their prior advertisements.

    When campaigns do reach the deaf and hard of hearing population and are translated into ASL, the meanings are easy to misinterpret. In ASL, the term “positive” denotes something good or beneficial. If the campaign does not explain the terminology “HIV+”, an ASL user could misinterpret the health-status as something desirable. For example, in discussion, one ASL user explained a circumstance in which he did not understand the results of his blood chemistry tests at his doctor’s office. Despite receiving an explanation from his English-speaking doctor, the patient did not understand why the doctor was not concerned about all of the “negative” results on his test. He did not understand the results until a person that was fluent in both languages explained that “negative” means “acceptable” and “positive” means a “red flag.” Because ASL is a visual language, analogies such as “red flag” are easier to understand than “positive” and “negative”. A campaign developed for the Deaf community should explain HIV/AIDS terminology using ASL. Simply captioning previous advertisements will not be effective methods of changing behaviors in the deaf community. Campaigns must be created that educate deaf people in their own language and reflect the norms and values of their community.

    Lack of accessible information leads to the dissemination of misinformation. Because the deaf community is a close-knit group, gossip and misinformation spreads quickly. Without sources of accurate information in ASL, incorrect information is spread by “word of hand” and deaf and hard of hearing people do not have resources to verify the information. By ignoring the needs of the deaf and hard of hearing community, KNOW HIV/AIDS is allowing misinformation to continue to spread.

    HIV/AIDS clinics and information centers create systemic barriers for deaf and hard of hearing Americans. Through the website, visitors can enter their zipcode to find nearby testing facilities. This site does not give information about finding sites that have a qualified medical interpreter or hiring a qualified medical interpreter. Also, the site does not provide TTY (teletypewriter) phone numbers for deaf and hard of hearing people to contact the testing sites or the campaign’s informational hotline. These limitations make getting tested and seeking care difficult for deaf and hard of hearing people. Many support and educational networks available by phone are inaccessible because employees are not trained to accept a phone call from a TTY. Because of the lack of trained staff, many deaf and hard of hearing people repeatedly have their phone call terminated by an employee who hangs up on them.

    Deaf and hard of hearing people may be afraid to access services because of the lack of confidentiality when hiring an interpreter. Because information is not accessible through the KNOW HIV/AIDS print media, website, or PSA’s, the only option for many Deaf people is to seek information at clinics where they must hire interpreters to obtain culturally-competent information. Many deaf and hard of hearing people will not feel comfortable talking about HIV/AIDS if they fear that an interpreter will not keep their information confidential. Even if the interpreter is certified and aware of the code of ethics, deaf and hard of hearing people are often still fearful about breach of confidentiality. This prevents them from obtaining information and getting tested for HIV.

    The KNOW HIV/AIDS campaign ignores the cultural barriers to information that affect many deaf and hard of hearing people. Through their website, KNOW HIV/AIDS teaches the reader to “Get the Facts, Get Tested, and Protect Yourself.” They offer tips for talking about HIV/AIDS and HIV testing with a health care provider. In fact, they list questions to ask your provider during the visit ( These recommended behaviors are difficult to perform for many deaf and hard of hearing people because of cultural barriers. Many health care practitioners do not spend time educating their deaf and hard of hearing patients about HIV/AIDS because they do not hire appropriate interpreter services and communication is difficult between doctor and patient. Doctors ask family members to interpret or hire people that are not trained in medical sign language. Because of lack of confidentiality in these situations, many deaf and hard of hearing people are unable to perform the KNOW HIV/AIDS recommended behaviors. For example, KNOW HIV/AIDS tells visitors to their website to “be honest about your sexual experiences, your lifestyle and if you use protection (” Honest conversation about stigmatized behaviors is difficult if information is being relayed through a family member or untrained interpreter. Doctors often do not hire interpreters at all and choose to write notes to their deaf and hard of hearing patients. Because of time constraints, limited information is passed between doctor and patient.

    In addition to the cultural barrier caused by lack of trained medical interpreters, environmental factors such as stigmatization affect the provider-patient relationship. Culturally Deaf people view themselves as a linguistic minority with their own unique culture, norms, and values. However, medical professionals frequently view them as “disabled” and have a pathologic view of deaf people that does not recognize their culture and language. In a recent study, researchers found that many deaf and hard of hearing people feel that physicians do not respect their intelligence or method of communication. According to the study, “interviewees felt that most physicians, largely unconsciously, hold fundamental assumptions about deafness that, from the outset, undermine patient-physician relationships (Iezzoni, 358).” Many respondents noted that their doctors frequently questioned them about their deafness despite the fact that they were visiting for a different health concern. Because deaf and hard of hearing people feel stigmatized by physicians, they are less likely to ask questions about HIV/AIDS to their practitioner. Also, when medical professionals pity deaf people, it assaults their self-esteem. KNOW HIV/AIDS recommends that people should speak with a medical provider about testing. Deaf people will not accept health messages from people that do not respect their identity and culture. An effective public health campaign must educate the medical community about Deaf culture or provide effective alternatives to information and testing outside of the medical profession.

    According to social science theory, “even where an individual accepts that their behavior puts them at risk, and has a full understanding of subsequent harms, other individual beliefs or environmental factors might inhibit adoption of healthy alternatives (Egger, 30).” For deaf and hard of hearing people, physical, cultural, and systemic barriers inhibit adoption of preventive measures. Even if a deaf person is aware of the dangers of HIV/AIDS, it is difficult to participate in honest conversation about risk factors and protection from disease. Stigma is an environmental factor that must be addressed by public health campaigns in order to promote behavior change for deaf and hard of hearing people.


    HIV/AIDS campaigns do not attack the stigma of having AIDS in the Deaf community. The stigmatization attached to having HIV/AIDS in the Deaf community is greater than in the hearing population. Deaf people view the disease as a “hearing” disease and a “gay” disease and this limits their willingness to engage in conversation about HIV/AIDS and get tested (AIDS Project Hartford). According to Protection motivation theory, behavior change is motivated by “perceived severity of the threatened harmful event and perceived likelihood that the threatened outcome will occur (Egger, 39).” The KNOW HIV/AIDS campaign only further propagates the myth that HIV does not affect deaf and hard of hearing people and decreases the perceived risk. Deaf people are invisible in the print media and advertisements created by KNOW HIV/AIDS. In the educational pamphlet “Get Informed, Get the Facts about HIV/AIDS and other Sexually Transmitted Diseases”, forty-four (44) pictures are placed throughout the pamphlet that show diverse populations of people at risk for HIV/AIDS including people of all races, ages, and sexual orientation. None of the pictures portray a person using sign language or hearing-aids. All of the KNOW HIV/AIDS campaigns use hearing actors and models. By not including pictures of deaf and hard of hearing people, KNOW HIV/AIDS is furthering the myth that it is a “hearing” disease.

    Culturally Deaf people share a strong culture and common social space. Many Deaf people work together, go to accessible events together, and socialize together. Because it is a small and close-knit community, gossip is very prevalent and confidentiality is easily breached. As long as the stigma of having HIV/AIDS is not addressed, Deaf people will neither seek services nor get tested due to fear that others in their community will find out that they are HIV+ or have AIDS.

    According to Maslow’s Hierarchy of Needs, “health needs might be compromised for the sake of satisfaction of lower-order needs before health promotion goals can be met (Egger, 31).” This theory states that behavior is motivated by a hierarchy of human needs and people must meet the lower level need before addressing higher level needs. From lowest to highest, human needs are categorized as physiological needs, safety, belongingness and love, esteem, and self-actualization (Siegel, class notes). Because of the stigmatization of people with HIV and AIDS in the Deaf community, Deaf people don’t want to get tested for HIV because other members of the community might find out and gossip about them. For many Deaf people, the belongingness and love of the community is more important than reaching level 5, self-actualization. The knowledge-action gap can only be understood by bringing in the values and attitudes of the community. In order to promote the behavior of getting tested for HIV, public health campaigns must attack the stigma of HIV/AIDS. The KNOW HIV/AIDS campaign does not attack stigma in deaf and hard of hearing populations. In fact, in only increases stigma by excluding Deaf people from the campaign.

    Delivering the Message

    KNOW HIV/AIDS does not include deaf and hard of hearing people in the decision-making process about the campaigns. Deaf people should be considered an at-risk population by KNOW HIV/AIDS and should be consulted and included to better disseminate public health information. According to social science theory, “the input received and analyzed must have personal relevance to the individual for action to be taken (Egger, 30).” Information must be disseminated by deaf and hard of hearing people in a manner that takes into account the norms and values of the population.

    In addition to providing information from a trusted source, campaigns should recruit respected Deaf leaders to deliver the message. The KNOW HIV/AIDS campaign utilizes hearing actors that use spoken language. Current print media does not portray deaf or hard of hearing people signing or using hearing aids. In order to provide relevance to Deaf people, KNOW HIV/AIDS should assist in creating advertisements in ASL using respected Deaf leaders.

    Historically, health care practitioners have only targeted campaigns about hearing aids and cochlear implants to deaf and hard of hearing people. Deaf people feel that they are continually labeled by science as having something wrong with them and will not respond well to campaigns by medical professionals that do not respect them. Public health information should not originate from the same source of information that tells deaf and hard of hearing people that they are medically “inferior.”

    Deaf community leaders must be given the resources and information to lead HIV/AIDS awareness campaigns in their community. Trusted information sources can disseminate public health information in accessible ways. By involving the Deaf community in the campaign, accurate information will reach the community. Using this information, leaders in the community can use Deaf norms and values to decrease the stigmatization of having HIV/AIDS and getting tested for the disease.

    Creating a Better Campaign

    The KNOW HIV/AIDs campaign has failed to consider the needs of the deaf and hard of hearing population despite the fact that they are an at-risk population. Deaf leaders should determine the best method of educating their community. The KNOW HIV/AIDS campaigns should provide outreach, advertising opportunities and funding to Deaf leaders in order to create an effective message. Instead of primarily using television and radio advertisements, Deaf community leaders may orchestrate campaigns that include visual information in deaf news sources and newsletters, live theatre and internet campaigns. Because the stigmatization of having HIV/AIDS will not disappear quickly, deaf and hard of hearing people need a safe and confidential place to get information and get tested for the disease. By creating messages in ASL and posting them on websites that are highly trafficked by deaf and hard of hearing people, Deaf leaders can teach deaf and hard of hearing people about HIV/AIDS in a safe environment. Also, ASL advertisements can be shown at events frequented by deaf and hard of hearing people such as at movie theatres that offer open captioning or Deaf sporting events. HIV/AIDS will continue to threaten the deaf and hard of hearing population until campaigns provide culturally-competent educational information about HIV prevention, remove cultural, physical, and systemic barriers, and deliver information using trusted spokespersons.


    Egger, G., Spark, R., & Donovan, R. (2005). Health Promotion Strategies and Methods. Australi: McGraw-Hill
    Iezzoni, L., O’Day, B., Killeen, M., Harker, H. (2004) Communicating about Health Care: Observations from Persons Who Are Deaf or Hard of Hearing. Ann Intern Med; 140, 356-362. (2006, September 5) HIV/Aids comic book for the deaf in SA. [online] Retrieved December 6, 2006 from the World Wide Web:
    Gaomas, S. (2005, September 30). Deaf people Cut Out of HIVAwareness Campaigns. Deaf Today. [On-line newspaper] Retrieved November 12, 2006 from the World Wide Web:
    Janssen, RS., Valdiserri, RO., Durham, TM., Nichols, WP, Seiler, EM., Jaffe, HW. (2003, April 18). Advancing HIV Prevention: New Strategies for a Changing Epidemic --- United States, 2003. Morbidity and Mortality Weekly Report [Magazine on-line]. Retrieved November 12, 2006 from the World Wide Web:
    Bat-Chava, Y., Martin D., Kosciw, JG. (2005) Barriers to HIV/AIDS knowledge and prevention among deaf and hard of hearing people. AIDS Care, 17(5), 623-34.
    Peinkofer, J. (1994). HIV Education for the Deaf, a Vulnerable Minority. Public Health Reports, 109(3), 390-396.
    Poor, L. AIDS and the Deaf. [On-line exhibit]. The Body: The Complete HIV/AIDS Resource. Retrieved November 14, 2006:
    Monaghan, L. (2006) Maryland 2003 HIV infection statistics for hearing and Deaf populations: Analysis and policy suggestions. Special Issue of Deaf Worlds: 22(1)
    Groce, N. (2003, April 26) HIV/AIDS and People With Disability. The Lancet: 361; 1401-1402.
    Groce, N. (2004, April). Global Survey on HIV/AIDS and Disability. Retrieved November 12, 2006 from the World Wide Web:
    Lacey, M. (2004, March 28). For Africa’s Deaf and Blind, AIDS Is an Unknown Language. The New York Times. [on-line newspaper]. Retrieved November 14, 2006 from the World Wide Web:
    AIDS Project Hartford. Deaf and Dying. [Article posted on the World Wide Web] Hartford, CT: Collins, N. and Smalley, R. Retrieved November 16, 2006 from the World Wide Web:

    Sunday, December 10, 2006

    HIV/AIDS and the Deaf Community: Simple English version

    This is adapted from a pamphlet by AIDS Initiative for Deaf Services (A.I.D.S). No words have been changed. The original pamphlet had a number of nice pictures and I hope to add pictures when I have time. Suggestions for links to appropriate pictures (HIV related or as simple as a drinking fountain) would be appreciated.


    You can get HIV by:

    *Sex (IC) no condom (rubber)
    *Share needles and shots
    *Blood to blood touch
    *From a mother to her unborn baby during pregnancy, birth or breast feeding.

    Body fluids of a person with HIV can spread HIV:
    *Semen (sperm)
    *Vaginal Fluids
    *Breast Milk

    You CAN'T get HIV by:
    Shaking Hands
    Toilet Seats
    Coughs or Sneezes
    Being around an infected person
    Sweat or Tears
    Drinking Fountains
    Swimming Pools
    Sharing Eating Utensils
    Mosquito Bites

    The best ways to stop HIV
    *No touch with person's blood, sperm or vaginal fluids
    *No share needles and shots
    *No use drugs or alcohol (beer/wine) because you can forget safety.

    Way to be safer if you have sex
    *Must use a latex condom (rubber) for vaginal (with woman) sex, for anal sex or oral (mouth) sex.
    *Must use a dental dam, plastic wrap or condom (rubber) cut to lie flat for mouth to vagina touch or mouth to anus touch.
    *Must use hand gloves or finger gloves when touching body fluids.

    How to use a condom (rubber):
    *Use condom--must "latex" best name. No other names.
    *Keep condoms in cool, dry place. No good in your wallet or car.
    *Must use condom first then sex.
    *NO let condom slip off during sex.
    *Use water-based lubricant (K-Y Jelly, Astroglide). NO Vaseline or baby oil.
    *No use broken/hole condom.
    *Finish sex, throw condom out. No save.

    Needles and Shots
    *People use shots for drugs, tattoos and piercings.
    *No share/give shots to other person. Use new shots.
    *No use dirty shots.
    *Dirty shots MUST clean (see below).

    How to clean shots
    *Wash shots with clean water 3 times.
    *Use bleach (Clorox) 3 times for shots. Clean shots in bleach for 30 seconds (time).
    *Again, clean shot with clean water.

    Talk about it...
    You don't need to be alone. Talking with counselors, teachers and health professionals about HIV very important. You can also call private CDC National STD and AIDS Hotline at 1-800-243-7889 (TTY). You may feel uncomfortable or funny, but that is ok. It is cool to talk. If you have any questions, ask. Many people happy to help!

    Have HIV???
    Get Tested!

    Many places have FREE and anonymous HIV testing. Anonymous means you don't tell your name. Ask counselor what test answers mean. ALWAYS ask for interpreting services. Agencies are required by law to provide interpreting services.

    If you have questions or need to talk, call the Commission on the Deaf and Hearing Impaired at (860) 561-0196 (V/TDD)

    For more information visit the CDC website at

    Sponsored by AIDS Initiate for Deaf Services (A.I.D.S)

    Friday, December 08, 2006

    Looking back on the work of the Deaf AIDS Taskforce

    The AIDS Intiative for Deaf Services, was founded by Rich Smalley, Noreen Collins and Harold Vrenna in 1993, and advocated for the rights of Deaf people in Connecticut and elsewhere.

    The following is an assessment by Harold Vrenna of the successes and challenges of A.I.D.S.

    1. Advocate for provision of qualified ASL interpreters at AIDS Service Organizations (ASOs), test sites, etc. This accommodation usually is only provided under pressure (with the notable exception of AIDS Project Hartford, and The Hartford Gay and Lesbian Health Collective, which have always attempted to make themselves accessible to persons with hearing loss). ASOs need to accept the necessity to provide this accommodation without question when a deaf or hard of hearing person requests this. Limited success. ASOs usually plead ignorance, lack of necessity (We gave him/her a brochure!) or lack of funds for failure to provide this.

    2. Training of ASL Interpreters in "Interpreting in HIV-Related Situations". Huge success. This training is critical as interpreters not only need to be savvy in the HIV infection and disease processes but the jargon, medical terms, cultural biases, internal biases, etc., etc, in order to successfully interpret in these situations. Workshops (several over the past 7-8 years) took two days and were uniformly evaluated as excellent by the participants. Funding for these workshops came from the AIDS Initiative for Deaf Services (A.I.D.S.), which we (Rich Smalley, Noreen Collins and Harold Vrenna) founded 1993.

    3. Sensitivity and awareness training of ASOs. Very little success.

    Resistance and "turf" issues seem to be in play. This plays in closely with #1 and perhaps some deliberate "ignorance" in order to avoid taking responsibility for dealing with deaf persons.

    4. Acquisition, development and distribution of deaf-friendly, culturally appropriate brochures, videos, public TV (Rich's forte), etc. on HIV infection and AIDS. Also "Medication Adherence Instructional" video in ASL, currently being prepared for release. Successful. Funded or partially funded by A.I.D.S.

    5. Health department has been requested many times to start collecting data on the numbers of deaf and hard of hearing who test positive from their test-site reporting. Failure! Complete stonewalling and refusal by the health department to consider this. This creates a catch-22 situation in that they claim that there are no meaningful statistics on greater rates of infection in this community but they refuse to provide the means to substantiate of refute this. Big surprise: No statistics
    means no money, manpower or resources allocated for deaf AIDS or HIV Infection Prevention Programs!

    6. Community based HIV-Infection Prevention mini-workshops in ASL format for the deaf community. Some success. However, not enough manpower or resources to have on-going and state-wide events. Funded by A.I.D.S.

    7. Staff instruction at schools for the deaf on "Steps for the Deaf" age-appropriate curriculum. Staff (teachers, dorm staff and adult vocational services) were trained to deal with human sexuality issues and HIV infection prevention within the student population. Huge success at the American School for the Deaf, West Hartford, CT under the leadership of Dr. Harvey Corson. Several workshops took place over the course of three years. Uniformly rated excellent by the staff in their
    evaluations, many of whom were at a loss as to how to deal with this with their students. Funded by A.I.D.S.

    8. Similar as #7 for deaf and hard of hearing outreach in mainstream public school programs (as opposed to schools for the deaf). No attempt made by A.I.D.S. due to lack of time, manpower, etc. It is questionable if they are getting the message due to isolation (academically and otherwise), lack of effective interpreting and few opportunities for incidental learning.

    All this boils down to constant advocacy by A.I.D.S and the realization by ASOs, health departments, education departments, HIV-test sites, etc., that provision of accommodations and full access to any and all servicesre: HIV/AIDS is not an option, but a necessity, right and obligation!

    Thursday, December 07, 2006

    HIV/AIDS and Deaf Communities

    Welcome to the new blog, HIV/AIDS, Deafness and Disabilities. It has been created to bring together activitists working in all areas connected with HIV/AIDS and communities everywhere of Deaf people and people living with disabilities. Please contact me if you would like to join this blog or comment in the comments sections.

    I thought I'd start by posting the presentation I gave in June 2006 at the Society for Disability Studies to give people access to some basic information on the issue. The above image is of Deaf AIDS activist Brad from a profile by Loel Poor.

    HIV/AIDS in Deaf communities
    Society for Disability Studies, June 2006, Washington DC
    by Leila Monaghan and Constanze Schmaling [1]

    My (Leila Monaghan’s) introduction to the problem of Deaf people and AIDS (HIV had not yet entered the discussion) was in 1988 in my first sign language class at Gallaudet University. One of my classmates was an AIDS activist and was regularly volunteering with Deaf people living with and dying from AIDS in New York City. The problem was highlighted for the public in an article in Time Magazine in 1994 and an article in the HIV magazine POZ in 1998 [2]. I was inspired to work on this problem after the death of a Deaf colleague, someone kind, generous and multi-talented and much missed in my profession. Although there were whispers nobody actually said this person died of AIDS. For me AIDS was confirmed only when I found this colleague’s name on the moving website of Deaf people who have died of AIDS. The silence and stilled hands on the topic of my colleague’s death is just a symptom of a much larger problem.

    There is still no widespread recognition of the fact that Deaf people are living with and dying from AIDS at higher rates than hearing people, by estimates at rates two to ten times higher than hearing people. Local clinics are providing essential services but most public health authorities do not recognize Deaf people as an at risk population so do not gather statistics. What I would like to do in this paper is present information from the issue of Deaf Worlds my co-author and I have finished co-editing on the problem, discussing the extent of the problem here in the U.S. and internationally as well as discussing some the ways that communities around the world have begun to address this problem.

    An analysis of HIV testing data from the Maryland Department of Health and Mental Hygiene’s publicly funded sites in the United States shows the rate for HIV infection there to be twice as high among deaf people than among their hearing counterparts [3]. In 2003, 38,602 hearing people were tested at Maryland public sites (18,572 male, 20,030 female), with 813 testing HIV+; and 832 deaf people were tested (551 male, 281 female) with 38 of those testing positive. Comparatively speaking, 2.1% of the hearing people tested and 4.6% of the deaf people tested were HIV positive. Although it is difficult to judge because of the inaccuracy of the population statistics for Deaf people, when one does allow for overall population estimates, this number rises to an estimate of Deaf people being ten times more likely to be HIV+ [3]. This points to an epidemic that threatens not only the lives of Deaf people but larger hearing populations as well. The public health issues of Deaf people cannot be separated from the public health of entire nations.

    According to the Maryland statistics, the epidemic looks different in the Deaf population than it does in the hearing population. In both the deaf and hearing populations, men are more likely to be HIV+ than women. In the hearing population, 2.8% of the men (513) versus 1.5% of the women (300) tested positive. The rates of infection are far closer, however, in the deaf people that took the test: 4.7% of the men (26) and 4.3% of the women (12) tested positive. Given that fewer women than men took the test, this implies that there might be significant numbers of undiagnosed women in the population.)

    Compared by age, deaf people have a greater risk of infection (a ratio of >1) than their hearing counterparts for every age category but the one for people 60+. The younger the deaf person, the proportionally greater risk that a deaf person will be HIV+ than their hearing counterparts (see chart).

    It is important to note that just because the problem of HIV/AIDS might be less in a group in hearing society, it does not mean that HIV is not an issue in the equivalent deaf group which can be seen when the data on ethnicity is examined: Among the hearing people tested, 91% of the people testing positive were African American (740), 7.3% were white (59), and .6% were Hispanic (15). Among deaf people tested, 81.6% of people testing positive were African American (31), 15.8% were white (6) and 2.6% were Hispanic (1).

    The most severe problem for deaf people is among intravenous drug users (IDUs). One in every ten deaf IDUs tested HIV+ (19 of the 190 IDUs tested), almost double that in the hearing population of IDUs Also an issue is transmission by males having sex with males, although the rate among deaf people is slightly lower than among hearing people.
    Although 38 cases is too small a sample from which to draw definitive conclusions, the distribution of HIV infection within these cases shows that HIV infection expresses itself differently in the deaf population than the larger hearing population. As can be seen from the above graph, younger deaf people, white deaf people and deaf women are all more likely than their hearing counterparts to be represented in the HIV+ population. The main weapon to fight the spread of HIV/AIDS is information and education. Awareness campaigns both by the government and by non-governmental organisations are mainly through the mass media and through educational materials. Deaf people often have limited access to this information as it is presented either in spoken or written language. This communication barrier is also present in medical settings as health care providers usually do not know sign language. The result is that the typical health education programmes as a means of combating the spread of HIV/AIDS do not reach the deaf communities. One survey with 450 deaf adults in eight US states [4] showed that while most deaf participants had basic HIV knowledge, there were gaps in knowledge about transmission and protection. Another US survey shows, however, that if information was provided in American Sign Language, deaf adults benefited greatly from the educational intervention [5].

    At Gallaudet University in Washington DC, deaf peer health educators (PHAs) formally and informally teach sexuality and HIV/AIDS information to the Gallaudet University campus community on the individual, group, and community levels. The PHAs, who are extensively trained to become knowledgeable and skilled role models, use a variety of visual approaches which include presentations, workshops, drama plays, flyers and banners. This has proven to be an effective way to pass information to deaf and hard of hearing college students [6].

    That HIV/AIDS poses a serious problem is beginning to be recognised by deaf communities around the world, and some deaf associations have initiated small-scale HIV/AIDS education projects, e.g. in The Gambia and in Ethiopia, where deaf people get basic information on the virus in sign language [7,8]. In South Africa, SLED (Sign Language Education and Development) are publishing educational video materials for deaf students of all ages in South African Sign Language. These materials reflect both urban and rural real life situations in Africa and are specifically aimed at the deaf learner at school [9]. In Kenya, three VCT centres (Voluntary Counselling and Testing) have been established in collaboration with local stakeholders in different regions of the country [10]. In Brazil, outreach programs have been developed to reach deaf people in places where they congregate such as beaches and night clubs [11]. Although vital allies in the fight against HIV/AIDS in deaf populations, these groups lack the necessary funds to conduct large-scale projects and to produce the necessary training materials for their deaf members.

    • HIV/AIDS is a serious problem in deaf communities and should be recognised as such.
    • Local health providers and health authorities should work together with local deaf communities to develop materials on HIV/AIDS. Development efforts imposed from the outside without consultation with deaf communities have been shown to be problematic [12,13].
    • Deaf people need to receive information about HIV/AIDS in their own language, sign language. Materials on HIV/AIDS need to be easily accessible to deaf people. Formats that have shown promise include different types of visual materials such as videos and theatre pieces as well as printed materials with little text.
    • Deaf empowerment and peer-to-peer information networks seem to be powerful tools in preventing the spread of HIV/AIDS and supporting deaf people living with AIDS. It is particularly important that there are both male and female educators.
    • HIV/AIDS testing and treatment for deaf people must be accessible, convenient and confidential.
    • Qualified sign language interpreters need to be provided for all situations where information is presented in speech for meetings/workshops/interactions with HIV prevention educators, testing and counseling sites, ASOs, health care providers,
    support groups, etc. Qualified, sensitive and appropriately trained interpreters are the single most effective lifeline to all of the above.
    • To date, very little statistical information is available on this problem. Health authorities are encouraged to collect information on the prevalence of HIV/AIDS in deaf communities. You as individuals are also encouraged to send in the names of any Deaf person you know who has died of AIDS if he or she is not already listed on the Remember Their Names Website.

    [1] C Schmaling, L Monaghan (eds), "HIV/AIDS and Deaf Communities (DWHIV)," Special Issue of Deaf Worlds Vol. 22 (1), Spring 2006. Available through
    [2] DVan Biema, D. AIDS and the Deaf. Time Magazine 4/4/1994, 143 (14), 76--77 and S Friess. "Silence = Deaf. In the translation from English to sign language, HIV education loses something: lives." POZ April 1998, 60–63.
    [3] L Monaghan, "Maryland 2003 HIV infection statistics for hearing and deaf populations: Analysis and policy suggestions," In: Deaf Worlds 22 (1), Spring 2006. (see above). The authors thank the Maryland Department of Health and Mental Hygiene for access to these statistics.
    [4] M F Goldstein, E Eckhardt, P Joyner, R Berry, "An HIV knowledge and attitude survey of deaf US adults," In: Deaf Worlds 22 (1), Spring 2006.
    [5] T Perlman, S C Leon, "Preventing AIDS in Chicagoland: The design and efficacy for culturally sensitive HIV/AIDS prevention education materials for deaf communities." In: Deaf Worlds 22 (1), Spring 2006.
    [6] G S Roberts, "Sexuality and HIV/AIDS education among deaf and hard of hearing students," In: Deaf Worlds 22 (1), Spring 2006.
    [7] C Schmaling, D Loum, "The first HIV/AIDS education project for deaf people in The Gambia," In: Deaf Worlds 22 (1), Spring 2006.
    [8] A Teferi, "Deaf people and HIV/AIDS in Ethiopia," In: Deaf Worlds 22 (1), Spring 2006.
    [9] K Maclons, "Opening the door of life skills, HIV and AIDS education for the South African deaf learner,"In: Deaf Worlds 22 (1), Spring 2006.
    [10] K Henderson, "Short report of Liverpool VCT and care (LVCT) work in progress," In: Deaf Worlds 22 (1), Spring 2006.
    [11] I El Maerrawi, "A program for preventing sexually transmitted diseases for deaf people in the city of São Vicente, São Paulo, Brazil," In: Deaf Worlds 22 (1), Spring 2006.
    [12] N Kakiri, "A survey of the development assistance desired by deaf Kenyans: Final report." 2005. Unpubl. Report, Gallaudet Univ. Washington, D.C.
    [13] A T Wilson, N O Kakiri, "Improving overseas development assistance to Deaf communities in developing countries." Paper submitted at the Supporting Deaf People Online Conference 2005.