HIV/AIDS, Deafness & Disabilities

106 Clinics Serve the Deaf Community

2011-11-12T17:25:00.000-08:00

The POZ listing for Deaf HIV/AIDS services is growing! In April 2010, there were 96 clinics and other services listed. Today there are 106.

POZ Deaf Clinic Directory

Remembering Their Names

2011-11-12T17:16:00.000-08:00

The 2010 version of the Remember Their Names is now up listing those in the Deaf community we have lost to AIDS. Seven names were added in 2010, ten names in 2009.

http://deafaids.info/main/names

May all rest in peace.

AIDS Information (Explicit)

2010-07-22T02:59:00.000-07:00

Reposting this basic AIDS information:

This is adapted from a pamphlet by AIDS Initiative for Deaf Services (A.I.D.S). No words have been changed. Pictures were added by me.

HIV/AIDS AND THE DEAF COMMUNITY

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)
* Blood
* Vaginal Fluids
* Breast Milk

You CAN'T get HIV by:
Shaking Hands
Toilet Seats
Coughs or Sneezes
Being around an infected person
Pets
Sweat or Tears
Drinking Fountains
Swimming Pools
Sharing Eating Utensils
Hugging
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 http://www.ASHASTD.org

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

Deaf Lost to AIDS

2010-07-22T02:56:00.000-07:00

At the DeafAIDS website seven more names were added for 2009. People are living longer and healthier lives but AIDS continues to kill people we love. May they rest in peace.

Greetings from the Vienna AIDS Conference!

2010-07-22T02:46:00.000-07:00

Writing from Vienna where I am attending the great Vienna AIDS 2010 conference. We have had a wonderful week of disability workshops and we are looking forward to meeting the Vienna Deaf community tonight when we do our "Evening in Sign Language." Will be publishing more on the convention shortly.

96 Deaf AIDS clinics

2010-04-26T16:15:00.000-07:00

The POZ directory now lists 96 clinics that provide services for Deaf clients, a big improvement from the 42 they listed in 2008
POZ List of Clinics

Government resources on Deaf HIV/AIDS

2009-06-06T17:32:00.000-07:00

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

2009-06-01T01:58:00.000-07:00

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

2008-12-09T20:07:00.000-08:00

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

2008-10-06T11:17:00.000-07:00

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

2008-09-19T19:14:00.000-07:00

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

Neon flashing condom video

2008-09-18T19:27:00.000-07:00

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

2008-09-08T17:15:00.000-07:00

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

2008-09-08T16:20:00.000-07:00

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

2008-09-08T15:13:00.000-07:00

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

2008-09-08T14:17:00.000-07:00

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.

AIDS 2008, Monday August 4

2008-09-01T14:49:00.000-07:00

On Monday, I presented a paper on Deaf HIV infection rates in the United States. Only the state of Maryland keeps any figures on infection rates and those point to an epidemic being ignored by the larger public health authorities in the US including the Centers for Disease Control (the CDC). Deaf people consistently test HIV+ at about double the rate for hearing people.

Table 1
Maryland 2003, 2005, 2006 & 2007 Public HIV Testing Results

Year/ % HIV+
Pre-2000 Deaf 4.3%

2003 Deaf 4.5% Not Deaf 2.1%

2005* Deaf 3.3% Not Deaf 1.7%
2006** Deaf 2.4% Not Deaf 1.3%
2007** Deaf 3.5% Not Deaf 1.2%

These figures were from Maryland Public Testing Sites only, other testing sites in Maryland do not record information on hearing status.
* No figures were available for 2000-2002 and 2004
** Positive Percentages from 2006 and 2007 include both preliminary and confirmed positives
(Chart adapted from figures from HRSA 2001, Monaghan 2006 and from new information provided by the Maryland Department of Health and Mental Hygiene, July 2007 and July 2008).
For more complete figures, write hivdeaf at gmail dot com.

AIDS 2008, Opening Ceremony, Sunday August 3

2008-09-01T14:02:00.000-07:00

Between August 3 and August 10, I was in beautiful Mexico City with 25,000 other people for the AIDS 2008 conference. In the next couple of days I will be posting on the events of the week, from the colorful dancers of the opening ceremonies on Sunday to the great outreach program led by Donald Pilling of CSSQ on Thursday evening.

The opening ceremony was held at a large hall away from the main building. I had met up with Donald Pilling, a Deaf activist from from Montreal at the Global Village and we then met up with Washington Opiyo, the Deaf coordinator of the Liverpool Deaf VCT services in Kenya and his interpreter, Peninah Vulimu.

The four of us then tried to get down to the front of the auditorium to meet the official sign language interpreters of the event. The security people had no idea what we were talking about, we had to get the coordinator of all interpreters to talk to us and he finally introduced us to Daniel Maya, who does Mexican Sign Language (LSM) and Alexis Martinez, who does both LSM and American Sign Language.

After some discussion we were given good seats at the front and side of the auditorium. There were no LSM users in the audience (people in the Deaf community were very interested in the conference but couldn’t afford the high fee for participation in the main events) but Daniel stood on the left side of the auditorium and signed in LSM for the general public. I hope he was filmed so others can see him at some point. We were on the right side of the auditorium with Alexis doing ASL and Peninah doing Kenyan Sign Language (KSL) in front of us. All three of the interpreters did a magnificent job under incredibly difficult circumstances. Each signed the entire three hour opening ceremony without a break, conveying the words of UNAIDS Executive Director Peter Piot, President of Mexico, Felipe Calderón, and United Nations Secretary-General Ban Ki-moon with verve and clarity.

These working conditions were equivalent to interpreter torture. Normal protocol would have had interpreters changing out every twenty minutes particularly when interpreting for such important speakers as Piot, Calderón, and Ki-Moon. While it was wonderful to see three languages signed so beautifully for all to see, the lack of replacements for interpreters was typical of the lack of planning by AIDS 2008 on Deaf issues. The names of the interpreters were not even revealed until two weeks before the start of the convention. Usually interpreters are chosen well ahead of time and have preview copies of speeches and presentations to work with a month to six weeks ahead of a conference. We hope to work with AIDS 2010 to make sure that interpreter issues are dealt with long ahead of time.

Wyoming AIDS Walk, 2008

2008-09-01T13:30:00.000-07:00

Jamie Pond and I walked in the Wyoming AIDS Walk on April 19, 2008 to raise awareness about the problem of the Deaf HIV/AIDS epidemic. Fellow marchers were friendly and the weather was sunny and clear.

We invite everyone to march in their local AIDS walks with signs and information to raise awareness of Deaf issues until the CDC and national funding agencies recognize the impact HIV/AIDS has had on the Deaf communities.

Safe sex video from Deaf Bunny

2008-08-01T11:28:00.000-07:00

Great ASL video on the importance of safe sex and knowing about your partners from Deaf Bunny:

Kenyan Sign Language videos on HIV/AIDS

2008-08-01T11:16:00.000-07:00

Kenya has some great programs for Deaf people about the problem of HIV/AIDS, sometimes I think they are ahead of Americans in looking at the problem. Here are two videos from Kenya. Kenyan Sign Language is different from American Sign Language but some parts of Kenyan Sign Language are like ASL

T-Cells Attacked

Sign language speech from minister on HIV/AIDS & peer training

These videos and other are presented by Youtube user KoenVR

New list of organizations that provide Deaf people with HIV/AIDS information and services

2008-07-31T14:04:00.000-07:00

On May 10, 2007, I reported the POZ magazine website Directory of places that serve Deaf people. Then it listed 21 names, today it lists 44 names of organizations so I thought I would repost the link and the newly expanded list. As the list of providers that serve Deaf people is tricky to access from the main POZ website, just click above link for more information and fuller contact information on any of the clinics listed below.

AIDS Comprehensive Care, Education, & Support Services Program Program
Plymouth, MA
02360-2183

AIDS Services of Austin
Austin, TX
78752

AIDS Services of Austin
Austin, TX
78752-2911

Alliance For Living
New London, CT
06320-5741

Alliance for Living
Norwich, CT
06360

Beautiful Gate Outreach Center
Wilmington, DE
19801

Bristol Bay Area Health Corporation
Dillingham, AK
99576

Brotherhood Task Force of Northwest Louisiana
Shreveport, LA
71101

Brothers and Sisters Giving Back
Stone Mountain, GA
30088

Campbell County Health Center
Newport , KY
41071

Center on Halsted
Chicago, IL
60613

Claremore Indian Hospital
Claremore, OK
74017

David Powell Community Health Center
Austin, TX
78751-3401

Deaf AIDS Program Ravenswood
Chicago, IL
60657-5147

Deaf Community Services Of San Diego
San Diego, CA
92103

Family Service Foundation Inc.
Laurel, MD
20707-3596

Family Service Foundation, Deaf AIDS Prevention
Baltimore, MD
21218

Fulton County Health And Wellness
Atlanta, GA
30303-3045

Giles County Health Department
Pearisburg, VA
24134-1625

Hawaii Island HIV/AIDS Foundation
Kea'au, HI
96749

Herndon-Reston District Office
Reston, VA
20190

HIV Community Services of North Central Ohio
Marion, OH
43302

Kenton County Health Center
Covington, KY
41011

Lafayette County Health Department
Mayo, FL
32206

Liberty Regional Medical Center
Hinesville, GA
31313

Monroe County Health Center
Union, WV
24983-8415

Montrose Counseling Center
Houston, TX
77006-5511

Mt. Hebron Baptist Church
Mobile, AL
36617

Nicholas County Health Department
Summersville, WV
26651

Noble County Health Department
Caldwell, OH
43724-9124

Oak Orchard Community Hlth Ctr.
Brockport, NY
14420-1118

Perceptions for People with Disabilities
New York, NY
10027

Perceptions for People with Disabilities
New York, NY
10035

Professional Services International
Morningside, NY
10026

Project Hope
Allston, MA
02134-2013

Russell County Health Department
Lebanon, VA
24266

Scott County Health Unit
Waldron, AK
72958

Southern Illinois University School of Medicine
Springfield, IL
62794-9636

Suwannee County Health Department
Live Oak, FL
32064

University of Texas Southwestern Medical Center HIV/AIDS Research Unit
Dallas, TX
75235

Viral Disease Clinic
Shreveport, LA
71106

Visiting Nurse Association of New York
Staten Island, NY
10303-2640

Vocational and Educational Services for Individuals with Disabilitie
Brooklyn, NY
11217-1523

Youth to Youth Community Health Outreach Workers, Inc
San Bernardino, CA
92405

AIDS Information (Explicit)

2008-07-20T16:02:00.000-07:00

This is adapted from a pamphlet by AIDS Initiative for Deaf Services (A.I.D.S). No words have been changed. Pictures were added by me.

HIV/AIDS AND THE DEAF COMMUNITY

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)
* Blood
* Vaginal Fluids
* Breast Milk

You CAN'T get HIV by:
Shaking Hands
Toilet Seats
Coughs or Sneezes
Being around an infected person
Pets
Sweat or Tears
Drinking Fountains
Swimming Pools
Sharing Eating Utensils
Hugging
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 http://www.ASHASTD.org

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

New Chat Board

2008-06-02T16:44:00.000-07:00

One problem with blogs is that they don't foster conversations. In order to foster conversations and to give people a place to ask questions, I have started a chat board on HIV/AIDS, Deafness and Disability, all are welcome.

HIV/AIDS, Deafness and Disability Chat Board

HIV/AIDS can cause hearing loss

2008-04-10T13:19:00.000-07:00

Cate at Deafhub has posted an article about how
HIV/AIDS can cause hearing loss.

LSQ Signs for HIV & AIDS

2008-04-10T12:59:00.000-07:00

While many of the signs in ASL and LSQ (Langue du Signe Quebecois) are the same or similar, Michel Turgeon's signs for HIV and AIDS are quite different. Michel is the founder and director of Quebec's Coalition SIDA des Sourdes du Quebec (CSSQ), the Deaf AIDS Coalition of Quebec. He wanted signs that showed how HIV gets in your body but AIDS kills you.

HIV

AIDS

LSQ Video: Urgent Message about Deaf AIDS Committee

2008-04-10T12:56:00.001-07:00

LSQ Video about HIV/AIDS "Message Tres Important"

2008-04-10T12:49:00.000-07:00

More Deaths from AIDS

2008-01-29T12:31:00.000-08:00

The Remember Their Names memorial website, http://www.deafaids.info/remember/their_names.html has recently updated their list, adding names of Deaf community members who died of AIDS in 2007.

25 new names were added

23 men, 2 women

17 United States
6 Canada
1 Guam
1 United Kingdom

May they rest in peace and may we find new ways to spread the message about the dangers of HIV/AIDS

AIDS 2008 Update

2008-01-29T12:24:00.000-08:00

The organizers of AIDS 2008 responded very positively to our letter and we (the Global Committee on HIV/AIDS and Disability) are in the process of submitting an application for a Global Village Networking Zone and a number of cultural activities including an outreach program for the Deaf community of Mexico City. AIDS 2008 will be remarkable opportunity for HIV/AIDS with disabilities to reach out both to an underserved local population and to raise awareness of the problems on an international level.

Open letter to AIDS 2008 Organizers

2008-01-29T12:10:00.000-08:00

MEMO FROM:
THE GLOBAL COMMITTEE ON
HIV/AIDS AND DISABLITY

TO: Organizers of the XVII International AIDS Conference
FROM: The Global Committee on HIV/AIDS and Disability
RE: The Participation of Deaf People and People with Disabilities at the Mexico City AIDS 2008 Conference
DATE: November 23, 2007

We, the undersigned members of the newly formed Global Committee on HIV/AIDS and Disability call upon the organizers of the XVII International AIDS Conference in Mexico City to include people with disabilities at all levels of the conference and to provide far better services than were available at the XVI AIDS conference in Toronto. While we appreciate the efforts you are making to serve individual community members with disabilities, we feel that people with disabilities should also be seen as a group at high risk for HIV/AIDS.

Deaf people and people with disabilities around the world are as or more likely to be HIV+ as their hearing counterparts.1 People with disabilities are often at high risk of sexual abuse.2 Deaf people are particularly vulnerable because of lack of accessible information. Few nations or municipalities document the issue of HIV/AIDS among Deaf people, Blind people, people with physical or mental disabilities or other disabling conditions. This means that it is difficult to track the impact of HIV/AIDS on the community and difficult to get resources to improve conditions. For example, the 2005 UNAIDS report makes no mention of these problems despite Deaf people and people with disabilities being unusually vulnerable populations.

We request that the organizers of AIDS 2008:

• Invite prominent people with disabilities to be Keynote Speakers at AIDS 2008 to highlight some of the important issues related HIV/AIDS in the Deaf community and among people with disabilities.
• Make a good faith effort to solicit and accept scientific papers on issues of deafness and disability.
• Provide a space in the Global Village where Deaf people and people with disabilities can network and access services.
• This space could also serve as an information center where people newly disabled because of HIV/AIDS can get information from people experienced with disabilities.
• Provide time and space in the Media Office for an official press conference of the Global Committee on HIV/AIDS, Deafness and Disability.
• Provide far more sign language interpreting and access services including guides for blind people and physical accessibility coordinators than were available at the AIDS 2006 conference. Ideally, these services should be run out of a central location such as one associated with an area in the Global Village.
• Provide a significant number of focused scholarships for Deaf people and people with disabilities around the world.
• Commit to help advocate on issues concerning Deaf people and people with disabilities around the world including access to prevention information, demographic information about the spread of HIV/AIDS in communities, and appropriate counseling, treatment and support for community members living with HIV/AIDS.

Thank you for your attention to this matter,

Leila Monaghan, University of Wyoming, United States
Farida Asindua, Handicap International, Kenya
Andy Bartley, AID Atlanta, United States
Claudia Bisol, Universidade Federal do Rio Grande do Sul and Universidade de Caxias do Sul, Brazil
Steven C. Fedorowicz, Kansai Gaidai University, Japan
Anne Finger, Writer and Disability Rights Activist, United States
Lakshmi Fjord, University of California San Francisco, United States
Nora Groce, Yale University, United States
Kevin Henderson, HIV/AIDS and Deaf Activist, United States and Kenya,
Tesfaye Gedlu Mebrate, Ethiopian National Association of the Deaf, Ethiopia
Roberta Goldberg, Interpreter, United States
Deborah Karp, Deaf AIDS Project Maryland, United States
Kristin Lindgren, Haverford College, United States
John Meletse, Gay and Lesbian Archives, South Africa
Ruth Morgan, The University of the Witwatersrand, South Africa
Karen Nakamura, Yale University, United States
Olabisi Olawuyi, University of Ilorin, Nigeria
Washington Opoyo, Liverpool VCT, Kenya
Peter Oracha, Maseno University, Kenya
Constanze Schmaling, HIV/AIDS researcher and sign language scholar, Germany,
Michel Turgeon, Coalition SIDA des Sourds du Québec, Canada

1. Schmaling, C., & Monaghan, L. (Eds.). (2006) HIV/AIDS and Deaf Communities. Coleford: Douglas McLean. [Deaf Worlds Focused Edition, Vol. 22 (1).] Available at: http://www.forestbooks.com/pages/featured.htm; 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.
2. Groce, N.E. and Trasi, R. (2004) Rape of Individuals with Disability: AIDS and the Folk Belief of Virgin Cleansing. Lancet, 363(9422), 1663-4.

HIV/AIDS Information at the Rainbow Alliance for the Deaf Conference

2008-01-29T11:16:00.000-08:00

The Rainbow Alliance of the Deaf Conference in July 2007 in Atlanta, Georgia had a number of events connected to HIV/AIDS. These included an educational outreach talk by Andy Bartlett of AIDS Atlanta, an exhibition of pieces of the AIDS Quilt and Michel Turgeon, long time AIDS activist from Montreal winning the RAD 2007 Man of the Year award.

HIV/AIDS and Japanese Deaf People

2007-08-21T10:40:00.000-07:00

Steven Fedorowitz, an anthropologist working in Japan has posted an interesting blog piece on the growing issue of HIV/AIDS in Japan in both the hearing and Deaf communities: http://visualanthropologyofjapan.blogspot.com/2007/08/hivaids-in-japan.html

Listing of Accessible Clinics from POZ

2007-05-10T17:44:00.000-07:00

The POZ magazine website has this list of providers that serve Deaf people but it is tricky to access so I thought I'd post it here as well. Click above link for more information and fuller contact information on any of the clinics listed below.

AIDS Services of Austin, Austin, TX 78752-2911

Beth Israel Medical Center, New York, NY 10010-3101

Brotherhood Task Force of Northwest Louisiana, Shreveport, LA 71101

Claremore Indian Hospital, Claremore, OK 74017

David Powell Community Health Center Austin, TX 78751-3401

Deaf AIDS Program Ravenswood Chicago, IL 60657-5147

Deaf Community Services Of San Diego, San Diego, CA 92103

Family Service Foundation, Deaf AIDS Prevention, Baltimore, MD, 21218

Fulton County Health And Wellness, Atlanta, GA 30303-3045

Hawaii Island HIV/AIDS Foundation, Kea'au, HI 96749

HIV Community Services of North Central Ohio, Marion, OH 43302

Jordan AIDS Comprehensive Care, Education, And Support Services Program Program, Plymouth, MA, 02360-2183

Montrose Counseling Center, Houston, TX 77006-5511

Mt. Hebron Baptist Church, Mobile, AL 36617

New Directions Community Outreach, Inc. Winter Springs, FL 32708

New York State VESID, Brooklyn, NY 11217-1523

Oak Orchard Community Hlth Ctr., Brockport, NY 14420-1118

Perceptions for People with Disabilities, New York, NY 10027

Project Hope, Allston, MA 02134-2013

Schulman Schachne Institute, Brooklyn, NY 11212-3132

Visiting Nurse Association of New York, Staten Island, NY 10303-2640

HIV/AIDS and Disabilities Blog Carnival

2007-03-12T07:29:00.000-07:00

The theme of this issue of the Disability Blog Carnival was HIV/AIDS and disabilities. One thing clear from the submissions I received and other material I found on the net is how much in common people living with disabilities and people living with HIV/AIDS have and yet how distant from each other are the web communities of people with disabilities and people with AIDS. What I have tried to do here is first lay out some of the official sources of information on HIV/AIDS and then to present individual voices of some disability bloggers and AIDS bloggers. I had hoped to be able to write more about the interactions between AIDS and other disabilities. This has not happened but this carnival does point to larger overall similarities and differences between HIV/AIDS and other disabilities.

The official view
In the United States, HIV/AIDS is usually legally defined as a disability (the ACLU , and About.com have useful summaries of cases and issues). There is little information about the relationship between HIV/AIDS and disabilities but the few studies there are such as this one sponsored by the World Bank show disabled people are as or more likely to be HIV+ than their hearing counterparts. Reasons include lack of access to prevention information and appropriate treatments, widespread ignorance about the sexual activities of people with disabilities, abuse of people with disabilities, and in the case of the Deaf community, major linguistic differences between mainstream languages and Deaf people’s native sign languages.

Major government websites like those of the NIH , the CDC, and the HIV Testing site provide useful general information about HIV but little useable information about HIV and disabilities. The HIV Testing site, for example, lists information about American Sign Language on individual pages but there is no way to search for this information from their search pages. The magazine POZ , a general interest monthly that deals with a wide range of HIV/AIDS issues has a few articles of interest to disability studies, including a feature on a feature on a blind HIV+ designer and a classic article on HIV/AIDS and the Deaf community . POZ’s associated directory
provides easier to access information on the limited number of clinics that have special programs for Deaf people,
Blind people, people with physical disabilities or that provide transportation assistance . Suite 101 also provides useful general information.

View from the blogs
The commonalities between people with AIDS and people with other disabilities are clearest in the personal blogs. AIDS blogs include those listed at POZ, Best of the Web, and About.com’s forums. Good places to look for other disability-oriented blogs include Disability Studies, the Gimp Parade, and the Diary of a Goldfish. All these blogs reflect the practical and legal complexities of everyday life. Some posts are on general issues such as Goldfish’s amusing take on paint colors and Rasheen’s thoughts about his father. Many, however, deal directly with the effect of HIV/AIDS or other disabilities.

Tim writes about his struggles with AIDS and AIDS medications
I have been taking care of some of my own needs and not spending any time writing lately, mostly due to some really nasty days dealing with side effects from some of my medications and also because my body is showing signs of fatigue and wearing down.

and about the legal system supporting people with AIDS
congress has now re-authorized the Ryan White Act, but trimmed it down in so many ways that we are still trying to figure out what we have left. Actually, we no longer have Ryan White as it stood previously and in last week’s Statewide Title II meeting, we were told that HRSA is still trying to interpret the new definitions and new guidelines. When we all finally wade through the changes, I think we will find that by our “collective silence” in the halls of congress; we have ended up with very little as compared to what we used to take for granted.

David’s interview with Christine, a 21-year-old college student describes the on-going work she needs to do make sure she gets the services she needs such as personal assistants to help her get in and out of bed in the morning and evening and regular notetakers for her classes. Particularly interesting is her discussion of the challenges of balancing friendships with the roles of service providers.

Sue Bayliss blogs about Spasmodic Dysphonia
Dystonic movements of muscular spasms and tremor may result in significant levels of fatigue and diminished stamina thus making life more difficult to get through the day.

Blogs also document when things have gone right. Wheeled Traveler describes her joy at the unexpected access she had at the recreated 1830s Old Sturbridge Village.

Like the AIDS blogs, Disability blogs also discuss legal issues like this piece on the legal issues surrounding parents advocating for the rights of their autistic child.

Themes that runs through many blogs are questions about labeling, identity, boundaries of self and the language of disability or HIV/AIDS. For example, this piece discusses the legal ramifications of labeling a student as being emotionally disturbed and how these differ from labeling them as having a conduct disorder, these include that students considered emotionally disturbed cannot be suspended from school while those seen as having a conduct disorder can be.

Not only do bureaucratic systems label but so does the general public . Gordon writes
The first thing I am asked, of course, is not about my purpose there or a question about my work but the number one question I, and any other self-respecting disabled person, hates to be asked…

What do you suffer from?

I answered that I mostly suffer from exclusion and from being labelled by my impairment. Unsurprisingly, he looked at me blankly not realising that this is not his darn business! And in fact that it’s not anyone’s business strictly speaking…

Wheelie Catholic tells of similar experiences while shopping
Yesterday a woman approached me in the grocery store while I was shopping. She said "I really think, if I was you, that I would use one of those scooters to shop. Why don't I go with you and we'll get you one?"
Now I can't use a scooter because I don't have the trunk control to sit up in one. Nor can I transfer into one in the first place. I always get a mental picture of myself draped over a grocery scooter cart and someone on the intercom saying "Pickup in aisle three - quadriplegic down."

Bint Alshamsa offers a different perspective, one from a Southern point of view,
if someone saw me eating alone at the local coffeeshop one morning and they started asking me questions about my disability, I wouldn't consider it rude at all. It's just something we do down here. We will hold a conversation about almost anything with a stranger. On the other hand, striking up a conversation with the barista or customer at a northern coffeeshop, just isn't going get the same reaction.

Connected with talking with strangers is the idea of privacy, a repeated theme in AIDS blogs such as Ann’s as well as disability blogs.
We might not choose to share our HIV status with you. Many of us are afraid to share and with good reason. We never, ever know how someone is going to treat us until after we've told them. If a person reacts badly, we have to live with the consequences. We cannot UN-tell.

How to describe AIDS or disabilities is an on-going topic. Lady Bracknell has written what Goldfish calls ““one of the best explanations I've seen blogged about the Social Model of Disability.” Her example about John illustrates this.
Traditional/Medical Model
John can’t get into this building because he’s in a wheelchair.
Social Model
John is a wheelchair user. He’s disabled by the fact that this building doesn’t have a ramp or a lift.

Goldfish also discusses how to explain (or not explain) disabilities by arguing against a Tragedy Model, particularly how thinking about disabilities as tragedy traps people with disabilities.
What’s more, with HIV/AIDS, perhaps more than any other condition, disability often begins long before a person experiences functional impairment. The mere status, regardless of whether it poses any actual limitations, is enough to bring one up against disabling prejudice. Prejudice from both those who consider a person to have brought their condition on themselves, as well as those who may not, but consider HIV/AIDS so very tragic that someone with the disease might as well be on their deathbed from day one.

This discussion brings up two points about how HIV/AIDS differs from other disabilities, first that it is an infectious disease and second that while it is often controllable, AIDS is a deadly disease. These are topics that HIV/AIDS bloggers often address.

Marvelyn writes about the importance of protection against HIV.
As a woman living with HIV, I’ve learned this: at the time that the sexual encounter took place when I contracted HIV, absolutely nothing else was important except me protecting myself. Not his sexual orientation, nor his HIV status. I cannot blame him. I cannot blame my parents, my schools or TV. At the end of the day, I couldn’t blame anybody but myself.

Tim points out how the social and medical aspects of HIV/AIDS are intimately connected.
HIV is only manageable IF there is enough money to supply the medications in an uninterrupted supply, for life. Also it is only manageable if your health and your immune system stay strong and your virus never mutates to an untreatable one.

The reality of the deadly nature of AIDS haunts many of those writing about it. Dave Hingsburger, not usually an AIDS blogger, wrote about his friend Bob.
My best friend, Bob Clayton, worked in the home too. We had so much fun working shifts together and we fell in like with each other quickly. I would always check the shift lists to see if Bob's initials RRC were on the board on the same days that DH were there. I loved those shifts. So did the folks in the house. They liked all the laughter. We stayed friends even though he moved to Vancouver to take up a life there. I visited him regularly and talked frequently on the phone. I saw him slowly dying as AIDS began to claim him.

Even so I was unprepared for his death. Death, even expected, can never be prepared for. It hit me hard. All these years later, I still sometimes remember something that Bob said, something that we all did together, his bad choice in boyfriends, his great taste in decorating - all of it. Then it hits me, almost fresh, Bob's dead.

Even more difficult than facing a friend’s death is the task of facing your own. Jonathan’s blog is searing.
I woke up this evening, from another full night and day of sleeping, of saturating my mattress with sweat and thrashing with fever. And after a while, the fever broke, and the sickness subsided for a moment. And I felt, enough to finally think the thoughts in full, that my time here is coming to a slow close. That my days of walking this path are numbered, and that it’s ok.

Seriously, it’s ok.

….Fall seems to be heading to winter for me. As it’s supposed to. As it does, for everyone and everything we know and love. Whatever else happens, I know I will not be alone, on this side of the river or the next. To say that is a comfort is a gross understatement. I do not think my dreams are lies. I do not think my love is wasted.

I am recording this because people have asked if I am OK. And thing is, yeah, I am. I’m sick. Might be dying. But I am fundamentally ok, if a little wistful and sad sometimes.

Disabilities Blog Carnival Coming March 10th

2007-03-05T09:48:00.000-08:00

This blog, http://hivdeaf.blogspot.com, was scheduled to host the Disabilities Blog Carnival starting on March 8th on the topic of HIV/AIDS and disabilities but the posting of the Carnival has been postponed until Saturday March 10. In the meantime, additional suggestions for websites that should be included are welcome--just post links and a short description of why you think a website is important in the comments below.

In the meantime, March 8th is the big Blogging Against Sexism Day, so look forward to all your blogs against sexism.

33 more AIDS deaths listed for 2006

2007-01-06T15:20:00.000-08:00

The Remember Their Names memorial website, http://www.deafaids.info/remember/their_names.html, has just updated their list of Deaf community members who have died of AIDS.

33 new names were added:
31 men, 2 women
28 United States, 3 England , 1 New Zealand, 1 Spain.

May they rest in peace and may we find new ways to spread the word about the dangers of AIDS in the coming year.

This site is for everybody. I would be happy to add any personal stories about these people or any other information that you wish to share about your own or your loved ones' fight against AIDS. Just write a comment and I'll contact you.

Leila

Services available in San Francisco

2006-12-18T03:46:00.000-08:00

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: http://www.uccd.org/clientservices.html#aids

New website in French

2006-12-16T13:36:00.000-08:00

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.

Press Release from AIDS 2006 Conference

2006-12-15T10:34:00.000-08:00

The banner from http://www.aids2006.org/

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.

PRESS RELEASE
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.

FACTS:
• 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.

RECOMMENDATIONS:
• 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.

REFERENCES
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: http://www.forestbooks.com/pages/featured.htm
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

2006-12-15T10:24:00.000-08:00

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:
http://disstud.blogspot.com/2006/11/introduction-to-sign-languages-and.html

Version with links spelled out:
http://linganth.blogspot.com/2006/12/lesson-suggestions-for-introduction-to.html

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

2006-12-15T10:13:00.000-08:00

A paper by Public Health Masters Student Wendy Trafton. Also available at: http://sb721.blogspot.com/2006/12/reinventing-hivaids-public-health.html

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 (www.knowhivaids.org).” 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 (knowhivaids.org), 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 knowhivaids.org. 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 knowhivaids.org 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 (www.knowhivaids.org/tested_talking.html). 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 (knowhivaids.org).” 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.

Stigma

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.

References

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.
ANDnetwork.com. (2006, September 5) HIV/Aids comic book for the deaf in SA. [online] Retrieved December 6, 2006 from the World Wide Web: http://health.andnetwork.com/index?service=direct/0/Home/recent.fullStory&sp=l51385
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: http://www.deaftoday.com/v3/archives/2005/09/deaf_people_cut.html
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: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5215a1.htm
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: http://www.thebody.com/loelpoor/deafaids/brad.html
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: http://cira.med.yale.edu/globalsurvey
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: http://query.nytimes.com/gst/fullpage.html?sec=health&res=9C02E5D91130F93BA15750C0A9629C8B63
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: http://www.aidsprojecthartford.org/deaf.html

HIV/AIDS and the Deaf Community: Simple English version

2006-12-10T18:23:00.000-08:00

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.

HIV/AIDS AND THE DEAF COMMUNITY

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)
*Blood
*Vaginal Fluids
*Breast Milk

You CAN'T get HIV by:
Shaking Hands
Toilet Seats
Coughs or Sneezes
Being around an infected person
Pets
Sweat or Tears
Drinking Fountains
Swimming Pools
Sharing Eating Utensils
Hugging
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 http://www.ASHASTD.org

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

Looking back on the work of the Deaf AIDS Taskforce

2006-12-08T18:36:00.000-08:00

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!

HIV/AIDS and Deaf Communities

2006-12-07T20:03:00.000-08:00

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. http://www.thebody.com/loelpoor/deafaids/brad.html

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 http://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.