Next Steps
It takes a variety of strategies and initiatives to address this pandemic. It's about life and death and the survival of humanity.
-- Barbara Lee
I view my role as an advocate very broadly. Advocacy itself, as I did at AIDSWatch 2014, is but one aspect. Increasing visibility and awareness is an important aspect as well. After a great deal of consideration, I decided to proceed with my plans to obtain a license tag denoting my serostatus: POZ MS.
I have registered the domain poz.ms, and I currently am developing a web site to serve as an HIV resource and information portal for Mississippians. A first draft of the site is now live. The site has four target audiences: (1) Those seeking basic information about HIV, including locations where they can be tested for the presence of HIV; (2) Those who have recently learned they are carrying HIV and are seeking additional information; (3) Mississippians living with HIV/AIDS seeking current news about developments related to HIV/AIDS; and (4) Those involved in advocacy and providing care to persons living with HIV/AIDS in Mississippi.
Education is another important aspect of my work as an HIV activist. In January 2014, I gave a presentation on HIV and mental health at the Fourth Annual Mississippi AIDS Advocacy Conference. I hope to work with the Mississippi branch of the Delta Region AIDS Education and Training Center, a program to educate healthcare professionals about HIV. I want to address the important topic of HIV and mental health which often is overlooked. The perspective of someone living with the virus is particularly valuable.
Although I enjoy speaking to groups about HIV prevention and living with HIV, research is another element of my work. In May 2014, I gave a presentation at the 26th Annual Conference on Social Work and HIV/AIDS. The title of my presentation was "HELP! I've Lost My Mind! There's An App for That!" I discussed approaches to coping with and rehabilitation of HIV-associated neurocognitive impairment, including the use of assistive technologies, both low-tech and high-tech.
I felt that others living with HIV could benefit from some of the material I presented at the Denver conference, so I submitted a proposal to the Positive Living conference, a conference devoted to those living with HIV, now in its 17th year. The proposal was accepted, and the presentation was very well received
At the Denver Conference on Social Work and HIV/AIDS, attendees were treated to a lunch funded by Gilead, a manufacturer of HIV and hepatitis C medications. Derek Spencer, Executive Director and co-founder of the JACQUES Initiative at the University of Maryland's Institute of Human Virology, spoke at the luncheon, and towards the end of his presentation he noted that HIV/AIDS has become an issue with so many different facets that no one could become proficient in all areas of HIV care. He exhorted the audience to select a specific topic and become experts in that area, to "know your something." I was inspired by this idea to "know your something" and I decided at that moment my "something" would be HIV-associated neurocognitive disorders (HAND). Since then I have been studying the research in this field intensively in order to become as knowledgeable as I possibly can. I intend to become the leading social worker on the subject of HAND.
This effort already is producing results. I have collaborated with Professor David E. Vance at the University of Alabama at Birmingham on a paper which is scheduled for publication in the Austin Journal of Neuropsychiatry and Cognitive Science, and we will be working on additional papers.
I have taken my Denver and Fort Walton Beach presentations and converted them into a two-hour workshop on HAND. I had 50 minutes in Denver; it was not enough time. I had 90 minutes in Fort Walton Beach; it was almost but not quite enough time. I thought a two hour workshop divided into two one-hour segments would work best.
My first audience for the new workshop was the social workers and case managers at AIDS Alabama. I am scheduled to present both versions of the workshop in Palm Springs, CA in June. I am planning to take this workshop "on the road." I hope to present it to groups around the country.
I was accepted into the Google Glass Explorer program, and I am interested in using Google Glass as an assistive technology for HIV-associated neurocognitive disorders. Notwithstanding my interest in technology, I never have been an early adopter. I prefer to wait for technologies to mature and prices to drop. I waited until Walkmans were $50 before I bought one. Similarly, I waited for the prices of CD players, cell phones, and then smartphones to drop dramatically before finally making purchases.
I would have been content if I were among the last to acquire Google Glass; however, my interest in Google Glass intensified after I learned of work done by a team at Carnegie Mellon University. This group combined facial recognition technology with Google Glass to address cognitive impairments occurring with traumatic brain injury. With one syndrome known as prosopagnosia, one loses the ability to recognize faces, even faces that have been known for many years. A report on the CMU group's work is located here.
Mississippi Public Broadcasting produced a program about living with HIV in Mississippi as part of its Southern Remedy weekly medical series. I participated in a panel discussion with seven other HIV-positive Mississippians which is part of that program. The program was broadcast on May 5, 2014. Here is a promotional clip:
I think I had about ten seconds of air time out of a 60-minute show, which is fine by me (even though there's quite a bit I said during the taping that did not make it into the broadcast). They showed the old white guy zinging the public health agencies for sending mixed messages. I said I thought the public health agencies were de-emphasizing HIV at the wrong time. I think there is an attitude that HIV is a solved problem, but it really isn't.
After attending the first HIV Is Not A Crime conference in Grinnell, Iowa, I resolved to seek changes to the Mississippi HIV criminalization statute. In Mississippi, as someone carrying HIV, I could be charged with a felony for spitting on or biting someone. HIV cannot possibly be transmitted in this manner.
The first version of the poz.ms site is now live. It still is very much a work in progress, but I hope it will become a resource for those living with HIV in Mississippi, for Mississippians looking for more information about HIV, for providers of care to those in Mississippi living with HIV, and for Mississippi HIV activists and advocates.
I want the poz.ms web site to be a community resource. It will serve that purpose only if the communities let me know what resources it needs, and what other resources are available. Please send a message to nick@poz.ms with your suggestions and recommendations.
Other projects are in progress, but things are not yet sufficiently developed that I am prepared to discuss them. I will update this page as plans become more definite.
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Last revised: April 9, 2015.
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