Politics and HIV
POZPLANET Magazine endorses Colin Johnson for City Council Toronto Centre
If you had asked me two years ago what I would be doing post pandemic my last answer would be running for City Councilor in Ward 13 Toronto Centre. I used to think I was living on borrowed time, but I have come to realize that my living with HIV for the last 38 years has made me stronger, defiant, and insistent that PLWHIV (People living with HIV) must have a place at the table.
I watched helplessly as my friends died, rejected by their families and a broader Gay community. Governments at all levels did nothing and society either did not care or placed the blame on our unnatural behaviours. The extreme right wing evangelicals stated that it was God punishing us for our sins.
Our response was the creation of ASOs (AIDS Service Organizations) now the templates for many community led programs. Safer sex, harm reduction all were the children of the AIDS Movement. We questioned the omniscience of doctors challenged the pharmaceutical companies to make better drugs for PLWHIV.
What was once a death sentence is now an episodic illness treatable with one pill every day. PrEP (Pre exposure prophylaxis) and PEP (Post exposure prophylaxis) reduces one’s chances of getting HIV. And then there is U=U being undetectable means that one cannot pass on the virus to anyone. No Matter what!
Times have changed we are no longer in the 80s. I just turned 64 something I though I would never see yet here I am. HIV positive and all. I know that my life, facing challenges, advocating for my communities has placed me in a unique position to use my “lived experience” to serve Ward 13 Toronto Centre as your City Councilor.
Written by Colin Johnson Learn more here: www.votecolin-in.ca
I’m excited to have the opportunity to talk about living with HIV as a person who identifies as a woman and in what ways we are different. Over the next few months, I will be writing from the perspective of a woman living with HIV and will be interviewing other women living with HIV about various topics specific to them. If you read the interview done last month about me, you know some of my story. I’m hoping to share much more of that story with all of you. I hope to ensure we hear from a wide variety of perspectives, from women in all their diversities. Some of the things I’m hoping to write about: women living with HIV and research, criminalisation of women living with HIV, breast/chest feeding, raising children, CHIWOS study results, aging for women living with HIV, global perspectives on women living with HIV, stigma, gender diverse women, sexuality, Women Speak…and much more.
For those who didn’t have the opportunity to read the interview posted last month, a little bit more about me: in 1990, I was pregnant with my second child. My general practitioner had me tested for HIV, a practice that the Alberta Health Services had enacted to ensure that babies born to pregnant people living with HIV and the pregnant people themselves would be put on HIV treatment to ensure the virus did not transmit. The test came back negative. “Whew!”, I thought. The general belief at that time was that only gay men were at risk for HIV, but I figured, better to know for sure. Like many others at that time, I believed the prevalent messaging that only gay men were becoming HIV positive. So, I did not take precautions with my partner. Why would I? We were in a “monogamous” relationship, right? Turned out the monogamy was only on my part. I was in love. I trusted him. I had no reason not to. Except that our relationship was going down the tubes. We split up in the spring of 1991.
That summer, I decided to go for life insurance. I figured as a single mom of two children, I should have some financial back up in case something happened to me. A very nice nurse from the insurance company came to my home to draw blood and take a urine sample. She said I was being tested for a bunch of things and she mentioned HIV. I laughed “Oh, I don’t need to worry about that!” About a month later I received a letter saying I’d been turned down for life insurance because of an “abnormal blood test result” and to see my doctor. I ignored it. I had gained a lot of weight when I was pregnant so I thought it was probably gestational diabetes and I didn’t have the energy to deal with it. A few months later I got a call from the nurse at my GPs office. “You need to come in. It’s serious.” There was something about her tone of voice. I went in and was shocked when my GP informed me that I had tested positive for HIV. I demanded another test because I was certain the insurance company had made a mistake. Of course, the second test also came back positive for HIV. We hugged. And cried. She had delivered my son. She had been my doctor for a very long time. She asked if I felt I’d be supported. I said that I believed I would be. She then gave me the phone number for my local AIDS service organization and said, “If you need someone to talk to, call this number.” I was right. I was supported by my family and a close friend, the only people I told. I believe that I was supported because they viewed me as a victim. Sadly, the stigma that surrounds HIV means that society looks to put us into one of two boxes: the “victim” box: “Poor you. Someone else did this to you. You’re a victim.” Or the “deserved it” box: “You did something to deserve this. This happened because of your choices.” The reality is that I’m not a victim. And no one, and I mean no one, deserves to end up with HIV. If you think that somehow people deserve to have a terminal illness (or currently chronic’ish; we’ll talk about that), then give your head a shake.
The longest two weeks of my life was waiting for the HIV test results of my two children. Fortunately (although if you know anything about HIV, the risks are very low for transmission from mom to babe), my children tested negative. It was very hard on my children growing up not knowing if their mom was going to live or die. When I was diagnosed, there were no medications that were successfully treating HIV. It was a death sentence. I was told by the HIV specialist to whom I was referred to “get my affairs in order because (I) had at most six months to live”. I’ve since heard from other people living with HIV that this is a common “script”. I wonder if the doctors are taught this script at medical school when giving a terminal diagnosis? I had two small children (3 and 1) and no one who could be a guardian. I was terrified. I was extremely depressed and suicidal. I was lucky that the daycare my children went to were very supportive and were able to get me coverage, even though I was not able to work. I allowed myself to be depressed from the time after I dropped them off until I picked them up. I would come home and curl up in a corner of my bedroom and cry. I started seeing a therapist
again who had been my family therapist when I was going through my split and went on anti depressants. She was a lovely therapist but knew nothing about HIV.
It wasn’t enough. I still felt like my life was over and was spiraling out of control. After a few months of this, I finally picked up the phone and called the AIDS Network of Edmonton (currently HIV Edmonton). The social worker who answered the phone sounded like a very nice person but was a man. I said “I’m sorry, you sound very nice, but right now I hate all men.” and then I laughed sardonically. It took them about a week to find a woman psychologist to talk to me. There were only a couple of other women living with HIV at the time so they just weren’t prepared to support women. It was 1992 and the vast majority of people being diagnosed with HIV were gay men. Sadly, while things have improved a great deal for women, there still often is the attitude that there are too few of us to provide services specifically for women. I’m hoping to write here about how women are different and so need services designed for them and what we can do differently to ensure women are getting the supports they need from the time of diagnosis onward.
There’s lots more to write about and over the coming months, I hope we can have a frank conversation about what it is like for women living with HIV. Is there anything you’d like to hear about? Please don’t hesitate to reach out to the Facebook page via Messenger or comment on the post to let us know what interests you about living with HIV as a woman. If you are a woman living with HIV in Canada and would like to talk to me about your perspective, let me know. Do you have any questions you’d like answered? I can’t promise I’ll have the answers but I’ll do my best to find someone who does.
Take good care until next time, Deborah.
In last month’s column I wrote that, despite the topic getting pages and pages of screen time, the truth about HIV and aging is seldom told in an authentic way. Why? Because far more often than not the words of younger folks prevail. And while it’s true younger folks are indeed aging we all are in the literal sense they have no first hand knowledge of actually reaching post retirement age. I have. I’m 75. I’m on a mission to share both the good bits and not so good bits of aging with HIV. I want to have a more honest dialogue about aging than maybe we’ve had to date.
I want to say right away that being old with HIV isn’t all bad. The opportunity to look at life through the rear view mirror rather through the front windshield is a valuable one. So too is the perceived wisdom that comes with the years. Friends and connections one has made along the way are also a blessing. Cool too, with emptier agendas, is the freedom to design one’s days as one sees fit. Want to be a grumpy old man (or a non binary person)? Be one. You have earned it. Make the scones you never thought you could. Crank up Tom Jones on the old phonograph and enjoy!
The reality though is that living with HIV through one’s senior years is not a piece of cake. I’m finding it full of incremental challenge, through nothing much to do with HIV. True, I have peripheral neuropathy in my feet through some of the HIV drugs that were administered before we knew better. My walking. not to mention foot comfort, is impacted. I don’t, though, side with those who claim that a lifetime exposure to HIV drugs, or to inflammation or to the disease itself necessarily make our senior lives more difficult. True, our experiences may vary. I must only speak for myself, but I suspect I’m aging as I look around me, in much the same way as many my age, whether HIV positive or not. The fact that we on successful treatment, and that’s an increasingly large number, are NOT dying at an earlier age than our HIV negative friends and neighbours tends to bear that out. Research bears that out too.
It's dangerous, of course, to draw conclusions about the process of aging with HIV based just on one’s own experience and a gay white male experience at that and all the privilege that goes with it. My ear to the ground though tells me I’m not alone. Folks like me are grappling with a barrage of things that happen to you as you age, few of which have anything at all to do with HIV. In my case I’ll absolutely concede that neuropathy eventually resulted from me being HIV positive. My diabetes, on the other hand and my heart condition (I had open heart surgery last year) are, I suggest unrelated to HIV. My failing ability to remember names and a memory that seems to be weakening daily, along with my body? The symptoms too I’m suggesting, are unrelated to HIV. Or why is almost everyone I know in my age group, HIV or not, experiencing something not too dissimilar?
Comorbidities are often talked about in the context of HIV and aging. (Researchers love throwing around this word; it refers to the simultaneous presence of two or more diseases or medical conditions in a patient.) It’s a fact of life that we’ll have them, but because of HIV?
Probably not. There’s a lot of research out there on neurocognitive decline or impairment associated with HIV (sometimes called HAND) but EVERYONE faces neurocognitive decline sooner or later. I find it unconvincing that we somehow get it faster or more extreme.
So, what is getting old with HIV really like? My take is that it’s much like getting older without HIV. Along the way, if you’re like me, you’ll experience vision issues cataract surgery is super common, and I had mine at 72. I’ve also experienced memory loss issues and more tiredness than you can shake a stick at. If you’re like me too you will experience hearing loss. I feel less strong. Getting up from a low chair, one of the factors used to measure frailty, becomes more of a challenge. I can’t really garden for anything more than short periods. I think more about my own mortality than I ever have done. (It’s a topic some of us have avoided for years. We are not alone. In fact end of life issues for people with HIV have never received much attention from anybody!)
It’s worth mentioning that there are time tested ways to stave off some of the physical and mental symptoms of aging. Exercise is a contender for the lead spot. After my heart surgery, a fitness regime became part of my cardia rehab program, and the benefits were immediate. And if anybody my age is still smoking, get with the program! Try eating healthier too. Whatever we do, though, it’s the case that decline is inevitable. Issues like frailty, mobility, hearing, eyesight and the like are the challenges that likely face a poz guy like me much more dificuly than coping with my HIV. Add in housing issues, income security and the need we all have for companionship as one ages and one’s plate can get quite full.
As for routine care, I see my HIV doctor only once a year now, and that either on zoom or via phone. I have much more contact with a variety of healthcare providers, specialist or GP’s, than my HIV doctor. I suspect you will too.
Where and when do community assists come into play? Eventually they probably will, but from the HIV sector? I have little need right now for anything my local AIDS Service Organization offers. Does that mean that AIDS Service Organizations need not be asking what elderly people with HIV need? In fact some are. However, the need to construct a road map for AIDS Service Organizations faced with an aging population exists more urgently than ever. Their movement,
like mine, is limited. Pervasive ageism within our community (and the wider community as a whole) drives some of that inaction I’ll write more about the ageism thing next time.
About the author . . .Bob Leahy has lived with HIV since 1993 and has been an active and sometimes controversial voice ever since. A past POZ TO award winner, he is the former publisher of PositiveLite.com, repeatedly sited by Healthline as HIV’s most influential voice. He is also a member of the Ontario AIDS Network Honour Roll, received the Casey House Award for HIV advocacy and is a recipient of the Queen Elizabeth II Diamond Jubilee Award for his services to the HIV community
Activist: Francisco Ibanez Carrasco
So, one day I was flipping through social media and I came across this photo of a very handsome guy in a shower denouncing the term "clean" (meaning as in disease free). This term is very hurtful to those of us who are living with HIV and inflicts more stigma on us. His post inspired me to do the same and that guy actually saw my post and gave me a compliment. His name is Karl Schmid and I struck up a conversation to find out more about who is and why he decided to do the post.
JE: Karl...thank you for taking time to do this interview. How are you?
KS: I’m doing really well. Thank you for asking.
JE: So, would you mind telling our readers a little about yourself? Where are you from?
KS: Sure. I’m originally from Australia but grew up all over the world. My dad worked in fashion, so we moved a fair bit from when I was ten. I’ve been living in LA now for almost 15 years and it’s here that I decided to publicly talk about my HIV status. I had no idea that me talking about it would go viral but I guess also at the time I was one of the only, if not the only openly HIV positive person working in news media on air in the US.
JE: I was looking at a bio for you and discovered that you were a television personality and host in New Zealand. From red carpet events to working with the legendary comedian Dame Edna, you have had quite a career. Could you tell us how you started in TV and where can people catch you on TV today?
KS: When I was 13, we moved to New Zealand and that’s when I started working on TV. First as a kid actor and then a presenter / host. I was lucky because it was a great way to cut your teeth, being 15 and working on a three hour live weekly tv show. I learned a lot. After my education I spent time living and working in the UK and Australia and eventually landed a job working for Australian actor Barry Humphries who is famously known for his character Dame Edna Everage. That job took me all over the world and again taught me great lessons in producing and writing. I eventually settled in London and that’s where I was diagnosed HIV+ in 2007. At the end of 2008 I moved to LA to pursue a career once again in front of the camera and I’ve been here ever since.
JE: Who are some of the celebrities that you have interviewed or worked with? And do you have aspirations to act again?
KS: Oh boy. Well I’ve been doing this a long time now so I’ve spoken to a lot of celebrities over the years. Folks like Harrison Ford, Julia Roberts, Meryl Streep are some of the big ones all I should say have been super nice. There have also been some big stars who have been real assholes (am I allowed to say that?). It always surprises me when I meet someone who I have held in such high esteem, and they turn out to be mean or nasty.
JE: I found out that I was HIV+ about a week before my 23rd birthday in 1990. How old were you when you found out?
KS: I was diagnosed two weeks after my 27th birthday.
JE: Do you work with any HIV campaigns...and would you like to?
KS: I have done a few collaborations over years with various organizations. I created my media company with two partners called Plus Life Media (@pluslifemedia) three years ago to help foster new and current conversations around HIV and what it means to live with HIV with the hope of breaking the cycle of stigma that still exists. We partner with groups like Prevention Access Campaign (U=U) and others to get the important undetectable equals untrabnsmittable message out there. I’ve also done work with Casey House in Toronto and was fortunate enough to tour their
amazing facility when I was last there just before the Covid19 pandemic took hold. They are so fantastic, and I love the creative ways they come up with ways to raise awareness and much needed funds.
JE: And before we let you go...if you could talk to your younger self, what advice would you give?
KS: Great question. I would say, “Don’t give up, don’t let go, follow your gut and your heart and make sure you take the time to enjoy the ride. ”
Well, it had been a pleasure getting to learn a little more about you. I look forward to seeing you on TV soon and maybe hopefully meeting you in person one day. Thank you for inspiring me and so many others to stand up to stigma and live authentically. Thank you very much.
Be sure to check out Plus Life Media here: https://pluslifemedia.com And check out my interview out of drag here: https://www.youtube.com/watch?v=c8fGHAU2E9g
Listen to the mix here: https://www.mixcloud.com/djrelentlessny/ear candy october 2022 Download the video of this mix here: https://krakenfiles.com/view/3FKlXhm10Q/file.html
Check out DJ Relentless’ Mixcloud page: https://www.mixcloud.com/djrelentlessny Check out DJ Relentless’ HearThis page: https://hearthis.at/djrelentlesstoronto
It’s October already and it feels like the year has flown by. Between the up and down news cycle and the many Pop Culture moments of 2022, the only redeeming quality of it being October for me is there’s actually some good music and remixes. I got twenty two tracks to discuss and I believe you’re gonna either love ‘em or learn something.
So, let’s get started shall we…
There are some songs that should never be covered…and if you do, you should completely reinvent that song. I believe this is the case of Revival’s cover of “Earth Song (What About Us)” featuring Kathy Brown, Greg Gould, Phebe Edwards & The Ge0 Gospel Chior. I liked Michael Jackson’s original version but I love this version best. Even better than Hani’s remix of Michael’s. It feels like this remake makes the lyrics seem more relevant than ever.
And speaking of relevance, our second selection is the Liam Pfeifer Remix of the new P!nk called “Irrelevant”. I love her! She is probably one of the only Pop artist that can nail all of the points about social media and politics in one song. And the music video kills it! So spot on and definitely would be something that I would encourage MTV and the rest of the so called music video channels to put in their rotation at least ever two hours. We need more lyrics that mean something instead of the dribble that is inspired by TikTok and social media.
Our third track is the Ultimix of “Ghost Town” by Benson Boone. This song was released a year ago but I guess I missed the remix. Honestly, the original version just gave me those “Drivers License” vibes and I was so sick of that song that I kinda ignored this one. But now that some time has passed and I have discovered this mix I can stomach it. Don’t love it….but I don’t hate it.
Our next track hooked me because the melody of the lyrics are song to a classic 70s Dance song called “Popcorn” by Hot Butter. It is an instrumental and has been covered many times and updated in remixes but Tove Lo’s “2 Die 4” has given it lyrics. And the Amice Remix has made it something I would definitely play.
Craig David always reminds me of my first trip to London in the UK. “Fill Me In” had just been released and it was everywhere! I went record shopping and bought a lot of 2Step remixes to take back to New York. “Fill Me In” did well in the U.S. but 2Step did not catch on. God knows I tried in my programming and with my mixtapes. So, my thoughts of Mr. David are always from back then. Today I don’t think he has the same impact as he did. I still love his voice but he hasn’t quite struck a chord with the Pop Dance charts in years.
His latest release is a collaboration with Galantis called “DNA”. I have heard a couple of remixes, but I think I prefer the original mix for my programming.
Up next is “Heartstrings” by M 22 featuring Ella Henderson I have to say that Miss Henderson is definitely making the rounds. She being featured on a few releases over the past couple of months. I like her voice but I don’t think she has found the right song to crossover with a big hit. The production on this track is solid but sounds like a million other Club tracks today.
The seventh selection is “Close” by Ryan Ennis featuring Michaela. I have to admit when I read the feature’s name I got a little excited because I imagined it was Michaela Jae as the vocalist. I was saddened to realize it was not her. She needs a great crossover Club hit in order to make a splash on the charts. “Close” is good. Does it offer anything new or different? No. Good filler and closer to the sound that is most popular right now for club play and internet radio.
When I think of Calvin Broadus Jr, I say to myself “This muthaf_cka has come a long way from Long Beach, California.’ I couldn’t have imagined that when I heard him on Gangsta Rap Classics like “Deep Cover” and “What’s My Name” that he would be on a Club track with BTS. Of course, I’m talking about Snoop Dogg and his collaboration with Benny Blanco and the biggest K Pop group in the world…ironically called “Bad Decisions”. But I guess at this point in his career there are no bad decisions. His street creds are impeccable, and he’s even hosted a TV show with Martha Stewart. So, he has nothing left to prove. I actually don’t mind the track and I’d play this in my sets. And believe it or not, Snoop seems to be a little more than just a featured rapper on this one. Dare I say he is adding some vocals to this one! Good for him!
And keeping in the theme of Bad Things, up next is “Bad Memories” by MEDUZA & James Carter featuring Elley Duhe & Fast Boy. You see…when I say do you have something different offer I am talking about lyric wise. This song fits well with the last because it helps tell a story and has a theme. And who hasn’t made some bad decisions that have led to some bad memories? So, this one is definitely going in rotations in my sets.
Now, I know that “Lobby” by Anitta featuring Missy Elliott was in last month’s mix but when I heard the Kay Stafford Club Mix, I had to include it on this month’s mix. Great job with the productions and a nice solid club speed at 122 BPMS.
Anyone who has been following this column knows that my latest crush is on Bad Bunny. I just love that he uses his platform to speak out on things that concern him. From the murder of a Trans woman to the rolling blackouts in his home island, Puerto Rico, Bad Bunny is the type of artist that is raising the profile of Latin recording artists! So, every chance I get I show him some love in my articles. Plus, he’s kinda hot too! The Kue Remix of “Me Porto Bonito” featuring Chencho Corleone is definitely a Club Banga! And I believe he is the highest charting Latin artists to date.
On our twelfth track, I’m guess that Justin Timberlake is trying to secure a comeback. I’ve never heard him on a Latin song before but he’s probably following in Justin Bieber’s footsteps with “Despacito”. Don’t know if it will work for him but “Sin Fin” with Romeo Santos is a solid Bachata production. Sounds slow but is actually up there in BPMs. I’m hoping there are some remixes to make this a little more sellable and chartable on the Top 100.
This next song has been out for a few months, but I have been avoiding it. The combination of the Blacked Eyed Peas & Shakira just somehow nauseated me. I think it’s because she’s a judge on some dance competition show and I don’t really see her as a dancer. Maybe a belly dancer but not someone I think of for choreography. But the Farruko Remix of “Don’y You Worry” featuring Farruko was stomach able to be programmed if I had to play this for a function or request.
I watched Marshmello & Khalid perform “Numb” on the VMAs and thought “This is a cute song.” It would make for some good filler in a Pop mix. But then I heard the KC Lights Remix and it changed everything for me! It transformed this diddy into a serious House / Club productions! And if you make me wanna get up and dance, you’ve done something!
As the American in the Canadian room, I have learned that Canadians really support their own especially when it comes to their recording artists. And no one is a bigger cheerleader to their artists than the Canadian audience. It’s actually kinda beautiful to see. I guess there’s so many American artists trying to break through every day that it is hard to support them all. But once you get one big hit in Canada you are legendary! And Carly Rae Jepsen really broke through with “Call Me Maybe” a few years back. Well, she’s back with a blonde hair do and her latest single “Beach House”.
I’m liking this song for two reasons. First…the lyrics. It tells a story of the lines guys throw at girls to impress them or to pick them up. And second….the Craig Welsh Remix! Oh, and I guess there’s a third reason…the video is hilarious!
So, I remember back in the 80s how “Another Brick In The Wall” by Pink Floyd was kinda an anthem every fall as we went back to school. And even though the double negative of “We don’t need no education” was grammatically wrong, it was a sentiment felt by anyone who had to start doing homework again! And over the years I have heard many remixes and covers. But the Oliver Heldens Remix of “We Don’t Need” by Piero Pirupa has updated this classic and made it a Dancefloor Banga! And yes…this falls into one of my biggest pet peeves, rebranding. ‘Cuz this sounds exactly like the vocals were lifted off the original and should have been labeled a remix of Pink Floyd
Our seventeenth selection is the Sidetrak Remix of “The Promoter” by Armand Van Helden & Brittles. Come to think of it…I should have programmed this one right after “Beach House”. It’s another pick up song that boasts that the guy can get the girl into VIP. But she’s not havin’ it. She just wants to dance with her friends on the floor.
I so wish that there was a video for our next remix. Kelly Clarkson has invited Dolly Parton to revisit “9 to 5” on her latest cover and Jared Jones gave it a makeover. Do I like it more than the original? Nope. But it is a nice reboot to a classic.
When I read the title of our nineteenth track, I scratched my head and wondered if John Legend & Saweetie had covered the Don Henley classic “All She Wants To Do Is Dance”. But I was mistaken. It is “All She Wanna Do” and it’s a nice change of an uptempo song for Mr. Legend. And outside of his collaborations with Common and Andre 3000, I haven’t heard any raps on John’s work. And Saweetie throws in a nice bar or two.
You know…I can remember Paula Abdul ruling the Pop charts back in the early 90s. After her sweep at the American Music Awards she was unstoppable. So, when she released “Rush Rush” with a music video starring Keanu Reeves it was Pop Gold! It was a ballad, but I remember it being in heavy rotation on MTV (back when they played videos and had the power to make or break an artist). So, it’s nice see and hear that song re imagined by Jared Jones as a nice Pop House track.
Our twenty first track is another rebranded song that pisses me off. “Rainfall (Praise You)” by Tom Santa is a complete rip off of “Shackles” by gospel duo Mary Mary. Now while I love the Maurice Joshua Remix, their stance on gay people stops me sometimes from playing them. Great song and very inspirational but I just can’t support artists who are homophobic. Division is not community and this is definitely not the teachings of love. But nonetheless…Tom Santa has stolen their track and renamed it. This type of sh%t has gotta stop!
And to close out our mix this month, I chose Pedro Gil Remix of “Ebony & Ivory” by Paul McCartney & Stevie Wonder. First…I would have never thought that this Pop song would be remixed. Second…I think it is important that we send out as many positive messages into the world right now. And this song speaks to racial divide and living in harmony. Great message to leave you with as we go into November & December.
Be sure to get your FREE video download of this mix in the links at the beginning of this article. And check DJ Relentless’ Twitch video shows here: twitch.tv/relentlessthedj
