Every Monday morning I wake at 5 am, an hour earlier than normal, in order to spend an hour sending out my resume and looking for gigs in order to help me stay afloat. If you’re counting, it’s been six years since I’ve been employed.
For me each month is a complete hustle to make enough money to pay my rent, gas, electric and cell phone bills. Not to mention my fees for my website, memberships for Microsoft and Adobe. Then there’s the cost of transportation and of course my awesome dogs. I don’t have things like cable TV or internet because I simply can’t afford them.
Now I know you’re saying, “Wait, what about food, laundry, personal care and toiletries?” Here’s the thing, I’ve become very good at budgeting my pennies. Whatever extra money I’m able to bring in from public speaking, my artwork, my books and photography gigs goes to towards paying bills so I don’t fall behind, buying extra dog food, toothpaste, mouthwash, dish and body soap, laundry detergent, deodorant, body lotion, toilet paper or any other things I must have.
There’s no such thing as “play around money” and I will not be the kind of person who goes without basic things such as lights and gas because I purchased a pair of shoes or went out drinking and eating simply trying to impress folks or keep up appearances. However, there are those rare times when I’m able to purchase a new pair of shoes or buy new underwear (twice this year), but if you take a close look, you will discover that I have a very small “wardrobe”
I will say that my two best friends are simply amazing. Should I ever need anything, they are always right there to help me without making me feel a certain way and not once have they ever treated me like I am less than or some charity case. They’ve been my family since the day I met them back in 2007.
I know lots of folks think I do not have to pay rent since I live in low income housing. That couldn’t be further from the truth. There are also those who think since I’m HIV-positive I must get money from the state. Well, that's not true either. You see, I’m not sick enough to qualify for SSI benefits, nor do I want to be. I also refuse to go through the incredible hassle of getting $220 per month from County of Los Angeles through DPSS (Department of Social Service….welfare). That is a nightmare I’m not foolish enough to take on. Plus, I’m forced to disclose my HIV status far too much as it is.
While hanging out with three of my creative buddies, (artist, photographer and graphic designer) who all happen to be HIV-positive and pretty much in the same situation as myself, the subject of being paid for what we do came up and how amazing it would be if agencies who claim to be advocating so hard and doing so much good for us, would actually hire us, instead of asking us to work for free, saying things like “this would be a great opportunity for you,” and, “it would provide great exposure.” We all know if they wanted to they could.
“I can’t ever recall any time in my life, especially since being diagnosed with HIV, where great opportunity and exposure helped me pay my fucking rent” Cindy said with a hardy laugh. “And what in the Sam hell is a $25 Vons card going to do for me? Hell, I can turn a trick in the alley and make way more than that in two minutes but they want me for eight hours or more” Again, we all broke into laughter.
"Imagine if the words “supportive services” went much further than outdated HIV support groups or constant nagging about adherence and really started to support folks by offering them part time gigs from time to time which would help them live better."
“Why should we even have to seriously consider tricks in some alley or dark corner just to survive? I mean just think about for one minute. If all agencies, some of them with budgets in the tens of millions, including places like the Gay and Lesbian, where the CEO is making more than $400 grand a year, if they all hired us just once or twice a year, imagine what a real and lasting difference they could make in the lives of folks living with HIV and barely getting by. If they actually hired folks like us for their campaigns, we could pay our bills and buy real food instead of being forced to eat slave slop from food banks,” Mark stated very firmly.
“Not slave slop” I laughed.
“Kengi!!” Gwen screamed “C’mon now you know that shit ain't no damn good. Hell, how many times have you been asked to cover events for AIDS service organizations and not been offered a nickel for your time and talent?”
I nearly choked and replied “Too many times to count, but they will turn right around and pay some other photographer who isn’t HIV positive and could care less about folks who are, top dollar for their work. But I am supposed to do it for free.”
We continued talking and laughing all afternoon. Sharing stories about gigs and projects we are planning or working on. I was even able to sign the copies of my latest book they all had purchased.
As I was signing their books I thought to myself, here are three individuals living with HIV, but struggling to survive, but they found a way to purchase my book. Cindy now has all five. After signing the books I said “Thank you guys so much. I know this was a huge sacrifice for each of you to purchase my book. The support really means a great deal to me. Especially coming from you.”
“This is how you support people, Kengi. We all may be broke, but we find ways to honor and support each other without excuse. That’s what’s been great about this friendship we all share. We love and support each other, even when we can’t afford it. I will always find a way to support ya’ll, because ya’ll do the same for me.”
Imagine if the words “supportive services” went much further than outdated HIV support groups or constant nagging about adherence and really started to support folks by offering them part time gigs from time to time which would help them live better. Heck it could even help them to be totally adherent.
Imagine if “great exposure” and “great opportunity” translated to “we will pay you fairly” in addition to the exposure and opportunity. Imagine how greatly this could impact and even change the lives of many folks living with HIV who struggle day to day just to survive.
I know this sounds like something that can’t be done and you may even ask yourself how companies and agencies would identify individuals. They could start with changing how they interact and “support” individuals. They can place more emphasis on surviving with HIV instead of being stuck with HIV. They can take a greater interest in identifying goals and dreams of folks living with HIV and be more proactive and determined to helping that individual reach those goals.
There is far more to living with HIV than swallowing a pill, showing up for a doctor’s appointment or going to a support group. At the end of the day agencies, especially those claiming to be doing so much for folks living with HIV must do a far better job at helping people survive while living with HIV. But this can only happen when people become humans and not some number tied to funding. It can only happen when those at the top do more to make sure we all are doing well and not just those sitting on top.
The next morning, as I was about to head to Downtown Los Angeles to apply for a photography gig, I noticed a small group of employees from the Los Angeles Gay and Lesbian Center gathered outside with signs changing “rainbows don’t pay my bills” They were there to demand better pay for the people who provide care to those of us living with HIV. I was told that some of Center's front line employees are making a little more than fast food wages and are struggling to provide for their families or even stay housed.
I was told that many employees of the Center are leaving despite their dedication to serving the community because of the Center’s “gross mismanagement and low investment in the advocates and healthcare professionals tasked with executing the Center’s core mission”
Lorri Jean, the CEO of the Los Angeles Gay and Lesbian Center. earns $439,120 a year plus bonuses while the Center has a turnover rate of over 25% and many folks, including myself, leave seeking better HIV care someplace else or else simply fall out of care altogether. Now I learn that employees are also unhappy and leaving.
Something is completely broken in HIV care and the people who are suffering the most are those of us living and trying to survive with HIV or AIDS.
For the record, President Barack Obama, the Commander and Chief, the leader of the so called free world, earns a yearly salary of $400,000 before his perks kick in. It’s simply disgusting to know, Lorri Jean, the CEO of the Gay and Lesbian Center in Los Angeles, a NON-PROFIT organization is earning a base salary more than the President of the United States.
As I finish this article I’m laughing to myself, thinking of the chant “rainbows don’t pay my bills” and thinking of my time with my buddies, who would add “great exposure and good opportunity don’t pay our bills”
The rainbow flag that hangs outside Gay and Lesbian Centers all over the world is something that symbolizes as well as declares fairness, equality and inclusion, but I can’t help but wonder who this really applies to. More importantly, how it applies to folks like me.