Today the United States Conference on AIDS kicks off in Hollywood, Florida. I was hoping to be there but unfortunately I did not qualify for a scholarship to attend. I think part of the reason is because folks who work for agencies, magazines and organizations apply for the scholarships as well, thus making it much harder for someone like me to be considered. Furthermore, my focus on HIV and AIDS is around fair access to things like housing and quality health care and making sure folks aren’t being taken advantage of once they make it into “supportive housing." These are things no one wants to talk about.
Let’s be honest. Most people don’t want or refuse to even mention or address the fact that many folks living with HIV are not getting the care they so desperately need in order to enjoy a quality of life. In addition, no one is going to stand up and say “we don’t know how to fix these issues” because that would mean a loss of funding. So let’s just pretend the issues don’t exist and continue to get funded.
No matter which publication I read there are always these smiling faces with stores about how great life is while living with HIV. While they may touch on hardships the individual has overcome, I’ve never read a story that focused on the process of getting to those smiles.
Please, don’t get me wrong; everyone, including me, loves a story of victory and triumph. We all love a feel-good story, but why only those stories? Why only smiles, laughter, and the sun shining bright when we know full well many of our brothers and sister aren’t smiling or laughing and the sun in their life is replaced with constant rain. Why not share those stories as well?
Most of my work is centered around folks who are homeless, low-income and struggling. Their stories are amazing, but don’t always have happy endings. Their situations are plagued with the guilt, stigma and shame of neglect and abuse by the very places they must turn to for support. Their lives are prisons where they feel no hope, but they remain in care and are “compliant” with taking their meds and keeping their medical appointments. But no one ever notices they’ve become non-existent, absent if you will, in their daily life.
I know many individuals currently living in Shelter Plus Care units who live in fear of being evicted. Not knowing what their rights are. Struggling to keep lights and gas on and going days without eating because they simply cannot afford it. They have amazing stories of beating the odds daily, but their voices are never heard and their stories will never be printed because they do not fit into what we’ve grown accustomed to hearing or reading about.
"There are far too many people in charge of us (people living with HIV or AIDS) who don’t give a rat's ass about us. To them we are nothing more than a number attached to money."
Their stories would cause us to question those people in seats of power and just how well they are truly doing their jobs.
This week I received a call from a low income senior who has been living with AIDS for over 26 years, telling me they were depressed and feeling alone. They went on to tell me that they’ve started smoking again and how they haven’t eaten in a few days. I asked what triggered all of this and they told me their apartment was being remodeled and they’d been forced to live in a small part of the one-bedroom apartment with no use of their kitchen.
“Kengi, I don’t have money to eat out every day for the next three weeks and this paint smell is really getting to me.”
“I’m sorry to hear this. Please come over and have dinner with me tonight”
Once they arrived the sadness on their face bothered me. We discussed some options for them and I gave the person numbers they could call to report the problem. However, I don’t think they will call because this person lives in fear of being homeless again.
Now this person is already dealing with isolation issues, depression and other real life issues in addition to living with AIDS. Having to go days without eating and having to inhale paint smell are not things that should be taking place. The “supportive housing” agency should know this is not an ideal environment for any human being, much less someone living with AIDS. Relocating this person while the required renovation takes place would seem like a no brainer. But this individual is poor, formerly homeless and lives with AIDS. They are the fish in the fish bowl.
There are far too many people in charge of us (people living with HIV) who don’t give a rat's ass about us. To them we are nothing more than a number attached to money. Our overall health and wellness mean nothing.
Stories like this will go untold and this situation will go unshared and resolutions will never take place because no one wants to talk about or print stories like this.
But stories like this deserve the same kind of positive light as others. These stories can give voice to the voiceless and provide hope. Stories like these can serve to make others feel and know that they are not alone and that their lives have just as, if not more meaning then those on the covers and pages of HIV publications.
As a writer I feel I have an obligation to share these stories because these folks are our brothers and sisters, sons and daughters, aunts and uncles and in many cases our grandparents and elders, who deserve the same love and respect as we give to those with the bright smiles.
Sharing the lives and stories of folks who go unsung can provide hope to so many who suffer in silence and feel they are unworthy. They can provide support and encouragement which fosters inclusion and acceptance for everyone. Especially those who go without.
A long time ago, Bob took a chance on me. He shared my story here in PositiveLite.com. He didn’t water it down or try to make it acceptable. He never once asked me to change any part of my story so others could feel comfortable reading it. This meant that I mattered. It counted.
That meant a great deal, not just to me, but to folks like me.
Let’s tell the entire story of life with HIV, even those stories that may not get the happy endings that so many of us have. Let’s love and respect the sanctity of all our lives and experiences of living with HIV or AIDS.
Let’s "Keep Love Center in all we do and all we share.