Government resources on Deaf HIV/AIDS

Websites from the US Department of Health and Human Services on HIV/AIDS and the Deaf community.

August 2008 fact summary sheet:
http://hab.hrsa.gov/population/deaf.htm

Fact sheet in PDF form:
ftp://ftp.hrsa.gov/hab/Deaf.pdf

April 2001 Newsletter reporting on Fall 2000 meeting on HIV/AIDS and the Deaf Community

http://hab.hrsa.gov/publications/hrsa401.htm

Spreading the word on HIV/AIDS and the Deaf Community

I am currently working on a project to write to 100 government officials about the issue of HIV/AIDS and Deaf people. One problem I am coming across is that congress people only accept letters from people in their district. Would anyone be willing to co-sign a letter similar to the one posted below highlighting some of the major issues? If you are willing, please drop me an e-mail at hivdeaf AT gmail DOT com

Dear Senator X:

We would like to thank you for your on-going support for services and resources for people with HIV/AIDS, particularly for underserved rural people. Your support has saved lives and improved care for AIDS patients across the state and the nation. We would, however, like to draw your attention to another major underserved population, Deaf people. While deafness is relatively rare, Deaf people have been disproportionately affected by HIV and AIDS.

One major problem is that there are no national statistics on infection or mortality rates for Deaf people. The one source that we do have on HIV statistics in the Deaf population is from public testing sites in Maryland, which records the hearing status of people being tested. Between 2003 ad 2007, Deaf people were twice as likely to test HIV+ as their hearing counterparts (the range was 1.9 to 2.9 times higher). African American Deaf people have been particularly hard hit with a prevalence of above 6%, rivalling the rates of hard hit African and Caribbean nations.

Given that the Senate and the House of Representatives will be rethinking the American healthcare system in the coming months and years, we ask for your support for including Deaf people in the discussion. Important steps to narrowing the gap between Deaf people and the general population would include:

• Tracking the HIV epidemic in the Deaf population (something not currently done by the Centers for Disease Control or any other national organization).
• Emphasizing that all AIDS service organizations (ASO) must comply with the Americans with Disabilities Act and make their services available to all people with disabilities including Deaf people, and making funds available to help with the provision of qualified interpreters and interpreting services.
• Supporting the use of the latest technology by ASO and other community organizations to provide video interpreting when live interpreting is not possible.
• Supporting small Deaf oriented community organizations that provide invaluable educational outreach services for the general Deaf population and support services for those diagnosed with HIV. Many of these organizations have had their funding reduced or cut in the past few years and it will take considerable effort to rebuild a Deaf-oriented safety net.

Thank you for your time and consideration of this issue and we would be happy to provide you with further information and details.
Sincerely yours,

Leila Monaghan, PhD
Frison Visiting Scholar
Department of Anthropology
University of Wyoming

Deaf Lost to AIDS

The Deaf Lost to AIDS website, http://www.deafaids.info, has been updated, listing 20 more deaths from AIDS in the past year, 18 Deaf people, 2 hearing members of the Deaf community, two Canadians, one Spaniard, and 17 Americans. May they rest in peace and inspire us all to keep fighting.

Disabilities & HIV/AIDS Conference in Dakar, Senegal

3rd Meeting of the Africa Campaign on Disability and HIV&AIDS
Dakar, Senegal
December 1-2, 2008

The purpose of this meeting is to coordinate our participation in the International Conference on AIDS and STIs in Africa (ICASA), which will be held December 3-7 also in Dakar.

These dates in Dakar coincide with World AIDS Day (December 1) and World Disability Day (December 3), which is an opportunity for visibility and voice.


Please save the dates and reserve your travel early.

The meeting agenda and logistical information will be available shortly via email and on the website http://www.africacampaign.info) .

For further information please contact the local organizers of the meeting:
Dr Almouner Talibo, Handicap International (crvihsida@orange.sn)
Ms Aida Sarr, Secretariat of the African Decade (aidasarr64@hotmail.com)
Mr. Oumar Diop, Campaign Steering Committee member

With warm regards,


Dr Susan Girois
Handicap International
for the Africa Campaign on Disability and HIV & AIDS

Conference on Deaf People and Sexuality in

Important conference on Deaf people and sexuality in Mexico City next weekend (http://unsordosm.wordpress.com).

Neon flashing condom video

Flashing condoms anyone? A friend made this video and posted it at his blog http://visualanthropologyofjapan.blogspot.com. Shows how visual presentations can make a statement to everyone.

AIDS 2008, Deaf Outreach, Thurs Aug 7

The most important, and most successful Deaf event of the week was our outreach to the Mexico City Deaf community on Thursday night. While the main event was Donald Pilling talking about his own life as an HIV+ gay Deaf man and how to prevent the spread of HIV, we also had Cambodian hip hop dancers, an Israeli sign poet, the premiere of the first Mexican video on HIV and the Deaf community (a fictional story of a Deaf girl finding out she is HIV+ and the consequences), and a puppet show. The evening was both very informative and entertaining. While the Global Village was often noisy and had many distractions, these didn't affect our events--the busy atmosphere added to the general buzz of the event and of course the Deaf audience was not affected by the noise. We were also able to hand out specific information on HIV/AIDS including a handout in Spanish and copies of a beautiful South African comic book in sign language. One of the aims of the program was to break down some of the stigma and stereotypes involved with HIV and AIDS. Donald's honest and open presentation and the lively question and answer session that followed I think went a long way to helping people understand the issues involved.

Looking ahead to AIDS 2010 in Vienna, we hope to again do a Global Village community outreach and to reach even more people with information about HIV/AIDS, the Deaf community and people with disabilities.

AIDS 2008, Skills Building Workshop, Thurs Aug 7

On Thursday afternoon we gave a Skills Building Workshop. Although our attendance wasn't large, the audience was very international with people from Africa, Asia and North America, and were very interested in what we had to say. As I hoped, we made a number of new and useful connections. A summary of what people were speaking about and notes on the presentation I gave are below.


Reaching Deaf Communities
A Workshop on Bridging the Gaps
AIDS 2008, Mexico City
August 7, 2008

Presenters
Leila Monaghan, University of Wyoming, USA
Donald Pilling, CSSQ, Canada
Washington Opiyo Sati, Liverpool VCT, Kenya
Claudia Bisol, Universidade Federal do Rio Grande do Sul, Brazil
Jessica de Ruijter, VSO, Netherlands

Leila Monaghan
Anthropologist
Overview of issues
Presentation of demographic information
Introduction of some of the solutions

Donald Pilling
President, Coalition SIDA des Sourds du Quebec
Long time AIDS activist
Part of only Deaf run AIDS organization in the world
Years of experience doing outreach to Canadian Deaf communities
Has examples of outreach materials

Washington Opiyo Sati
Director, Deaf Outreach, Liverpool VCT, Kenya
Organizes regular stationary and mobile counseling and testing units (MVCT)
Made Kenya a model for many other countries

Claudia Bisol
Psychologist
Teaches at University of Caxias do Sul, Brazil
Coordinator of program for Deaf students
Research about Deaf adolescents and sexuality including narratives about sex

Jessica de Ruijter
Advocacy Officer, Voluntary Service Organization (VS0), Netherlands
Before starting at VSO in October, worked on prevention at UNFPA in China and for Dutch Ministry of Foreign Affairs
Will speak about challenges VSO has in doing work supporting programs for HIV & AIDS and disabilities.

Leila Monaghan
HIV/AIDS and Deaf People
Deaf people are often cut off from mainstream communication methods
Can’t get information from television, radio
Often also have trouble with complex literacy
Natural language for most Deaf people is sign language
Deaf people often part of close knit communities
Sexually active but don’t have information about protection
Governments often ignore needs of Deaf people
US Example
CDC does not keep statistics
Only state of Maryland does
Results from public testing data since 2003 show Deaf people are twice as likely to be HIV+ as hearing people.
In African American population of MD, hearing rate 3.4%, Deaf rate 6.4%
Epidemic is different in Deaf community, almost 1:1 male to female.
Differences between Deaf and hearing get worse as people getting tested get younger.

Many attempts to help Deaf community are cosmetic
TTY phone numbers listed don’t work
http://hivtest.org provides ASL as language but not searchable
Small centers often served community but support has dwindled in last 8 years

Can contact Leila at:
Hivdeaf at gmail dot com

AIDS 2008, Wednesday Aug 6

On Wednesday we have an outreach program by José Antonio Domínguez, the visually impaired president of Voluntad Para AIDA. He was assisted by his colleague Enrique Silva. José Antonio brought along eye masks and a bag of condoms to give people an idea of what it was like for blind and visually impaired people to negotiate the details of condoms and sex and the implications that had for the spread of HIV/AIDS. He gave his very lively presentation in Spanish to an enthusiastic group of AIDS 2008 Global village visitors. Donald Pilling and I didn't put masks on so we could see our ASL interpreter, Alexis Martinez and got to see exactly how the other audience members reacted to his program, a short version of a play he has been doing for over a year.

AIDS 2008, Press Conference Tuesday, August 5

We gave a press conference on HIV/AIDS and Deaf issues on Tuesday. Unfortunately, because we were opposite a big formal press conference (and because few people think about issues of HIV/AIDS and disabilities), no one came into our little press conference room. With the encouragement of the press conference staff, we took our press conference out into the press hall and Voice of America recorded interviews with Donald Pilling for their Latin American program and then (on Wednesday) with Washington Opiyo for their African program. What we wanted to tell the world about were the dismal statistics on HIV/AIDS rates in the US Deaf community and the innovative programs being developed in Canada and Kenya to combat AIDS.

That evening, however, we cheered up as we met a number of Deaf and hearing Mexican leaders in the fight against HIV/AIDS including Ernesto Escobedo, president of the Union Nacional de Sordos de Mexico, Erik Arelleno, and Sandra Oliver. Before we got to Mexico City, we didn't know what kind of education efforts were being done in the Deaf community so we were very glad to find and join with an already active outreach program. Through Ernesto and his colleagues and Gaspar Sanabria and the Mexican Federation of Deaf People we were able to put out the word to a large number of people in the Mexico City Deaf community about our outreach program on Thursday evening.