Personal Backstory Surrounding Both Projects:
On the 7th of April, 2016 I was diagnosed as HIV+ which lead to a series of unfortunate events that took a huge toll on my social, physically and psychological wellbeing as a direct result of the social isolation and depression generated by the autoimmune virus, which resulted in me turning towards drugs such as methamphetamine for emotional support, even after I had obtain a HIV undetectable status. On the 14th of April, which was my 22nd birthday, I decided to inform my grandparents of the diagnosis but instead was meat with a face I have become accustomed to: an expression of confusion, fear and pity equally matched by "I'm so sorry." This made me quite tired, very quickly until it just couldn't do it anymore and pubically announced my diagnosis online. It was only then that I realized that the stigma associated with HIV+ individuals still exists, and can be grouped into three types of reactions:
1. "I'm so sorry" which is then met with an ambiance of silence because both parties don't know what to say, which is most common.
2. The second type of reaction is the person you're disclosing the information to wants to understand where your mental headspace is at, and either can or can't - more often they can't and thus are unable to have help you process and accept the diagnosis, which brings me to
3. The internal marginalized generated from within the LGBTQI+ community, where the distinction between having "unclean/dirty" blood is looked down upon, especially on social media.
This domino effect instigated from my initial diagnosis, only excasibated by the desire and inability to communicate to those closest to me resulted in depression, anxiety, addiction and social isolation because and eventually left unemployed, alone with no money. It was then that something snapped as I didn't have anyone anymore - the diagnosis became how it was effecting them, rather than trying to understand and listen to why I was acting that way. As a result I attempted suicide in December because I no longer cared about myself. The only reason I am still alive is because I literally begged a person I only recently met, saying I was scared and on the verge of a complete breakdown. All my other friends had pushed me out of their life, including me housemate who moved out.
As a result of my lack of support, I began focusing all my anger and frustration into a single project entitled "di(+u)agnosis", which is a 20-30 minute interactive multimedia installation that uses a combination of projection, live string quartet and movement to depict the personal struggles caused by my HIV+ diagnosis. It is broken up into three distinct movements which are as:
I) The Data Movement
II) The Social Movement
II) The Psychological Movement
The most important aspect of "di(+u)agnosis" is that it asks the audience to participate and add to the installation through other medians such as photography, life drawing or social media by leaving a word regarding how has HIV effected your life, or through someone you know. This can then be used as souce material for future shows and performances, breaking social barriers that often surround invisle illnesses and mental health.
HIVme: A Documentary
As a part of di(+u)agnosis' visual component, alongside with friend and co-director Joel Stevenson, "HIVme" is a feature length educational docomentary that follows a sample group of 10 - 20 subjects of mixed gender, sexuality, ethnicity and HIV status and their experience and knowledge around a variety of subjects. The primary objective overall of HIVme is demonstrate that HIV does not define you, and that the stigma surrounding it is only perpetuated by lingering fear generated from the AIDS outbreak in the 1980's, and inability to understand. The most important point of discussion is the psychological health aspects that are a direct result of the diagnosis, including relationships with other people, particually those of serdiscordant statuses.
The documentary also will also explore issues surrounding disclosure laws and negligence, the policies and procedures that surround the health department in its approach to informing patients of a positive diagnosis.
The hope for this project is to perform it at the Science Gallery of Melbourne for their upcoming exhibition on blood which this was submitted for an open call, of which there is some potential funding.
I am in the process of obtaining backing from various health orginsations such as: VAC, Living Poisiive Victoria, Minus18, The Alfread Hospital and local arts grants.
How The Funds Will Be Used
The funds are being split into the projects, the breakdown are as follows.
The proceeds gained are direct pass through charges from myself to hire an editor, sound recording equipment and musician hire for an original score, lunch for each subject involved in the documentary as either a professional consultant or the individual talking about their personal journey surrounding HIV and the stigma and mental health consequences attached to the diagnosis. I am still enquring the potential costs (if any) that may be involved to visit the lab responsible for processing blood, and determining the HIV result, including travel expenses as well as hair and makeup.
All funds directly associated with the live multimedia installation project includes pass through costs including venue hire for rehearsals, musician hire, sound equipment, projection art, performance costs.
As both aspects of both projects overlap some charges may have to appear twice, depending on the production schedule and availability.
As a part of "HIVme" I have proposed a double blind study to the patcipants who are specifically HIV negative, which involves getting a qualified physiatrist reseaarcher involved to help design an experiment to capture the effects of what a potential HIV positive diagnosis looks and feels like for both the subject, and their relationships with others. For this to occur it must obtain approval from the ethics board due to the brief moment of physiological distress it causes.
The other and most difficult challenge will be finding a diverse enough sample group of people who are confident and willing to talk about their experience with HIV. I am ideally aiming for a sample size of 10 -15 partipcants, and currently have about 3 expressions of interest since posting an open call last night.
The last obstacle I feel is going to be getting third party professionals from their area of study involved to discuss mental health, law and current and upcoming scientific research facilities who's main focus is HIV preventative medication, and convincing them to be involved.