Friday, December 08, 2006

Looking back on the work of the Deaf AIDS Taskforce

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

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

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

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

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

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

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

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

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

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

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

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


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