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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.
Recommendations
• 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.
Notes
[1] C Schmaling, L Monaghan (eds), "HIV/AIDS and Deaf Communities (DWHIV)," Special Issue of Deaf Worlds Vol. 22 (1), Spring 2006. Available through www.forestbooks.com/pages/Categories/Books/0946252610.html
[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.
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.
Recommendations
• 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.
Notes
[1] C Schmaling, L Monaghan (eds), "HIV/AIDS and Deaf Communities (DWHIV)," Special Issue of Deaf Worlds Vol. 22 (1), Spring 2006. Available through www.forestbooks.com/pages/Categories/Books/0946252610.html
[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.
