On November 22, 2011 PositiveLite.com published my post called “On Getting Older”. In the post I wrote about being asked to sit on a panel at a symposium for a local ASO (AIDS Service Organization) on “HIV and Aging” that was aimed at the healthcare profession. At the end of the panel discussion I was asked to give a final thought, so I chose to speak on what I felt the healthcare industry needed to do to prepare for people living with HIV who may be coming into their facilities.
I had hopes of using my training from Speakers Bureau to go out and talk to PSWs (Personal Support Workers) especially since they are the frontline caregivers in most longterm care facilities, but those opportunities never surfaced - until now.
I have trained and worked as a PSW and have been witness to how some of my fellow students/co-workers have a very real fear of working with someone who might have AIDS or be HIV positive. The manual we learned from contained one paragraph on the subject; we discussed it for about fifteen minutes and moved on. What really bothered me most was that the subject appeared in the manual in the chapter on “Death and Dying”. The bottom line message was that universal precautions were all that was needed.
When we did the practicum for the course, we heard there was a gentleman on one floor in the facility who was supposed to have AIDS and almost unanimously my class mates said they wouldn’t go to work on that floor if they were asked to. At the time, I wasn’t out about being gay let alone my HIV status. I knew I didn’t have to disclose either of those facts to be in the class or to do the job so I wasn’t going to draw attention to it. I did feel there should have been more information but I was just too afraid to speak up.
I knew there were two ASOs (AIDS Service Organizations) in my area but I wasn’t involved with either of them so I wasn’t aware they offered an “HIV 101” course. When I did get involved, ACCKWA (AIDS Committee of Cambridge Kitchener Waterloo & Area) asked if I was interested in taking the Speaker’s Bureau training. I have never been comfortable speaking in public but I believed then and I still believe that if I could put my face and my story to what it’s really like to be HIV positive then I could help end the stigma we all live with.
When I completed the course we were asked where we wanted to go, who did we want to speak to. My choice was clear, I felt the healthcare system needed to hear more about HIV and no tto be afraid of it. And then I waited.
Two and a half years later, I am pleased to be able to thank ACCKWA, their Education Coordinator, Carolyn Keays, and PHA Capacity Development Coordinator, Lynn Cashubec for opening that door with their connections in the healthcare education system.
HIV 101 by Carolyn is pure entertainment; the way she delivers it with unexpected raw humour makes it an engaging learning experience - a true example of “never judge a book by its cover”. I know what to expect so I watch for the reaction from the audience, the surprise of “did she just say that?”. When I get up to share my story, I have to inject some humour of my own or I’d put everyone to sleep. She is one tough act to follow.
In April Carolyn and I went to do an HIV 101 with 14 nursing students at Conestoga College in Kitchener. It was their last day of classes. One thing that stood out for me from that day was when Carolyn asked the students to name the five fluids which can contain HIV. They were able to come up with seven if I remember correctly. Some of the fluids they called out included sweat, feces and urine. As I sat there, I thought, WOW! As they were told which ones were right there was an element of surprise to learn three weren’t on the list. It was a validating moment for me that yes, the healthcare profession needed more education.
Three weeks ago I was able to accompany three of my peers to talk to about 50 first year medical students at the Kitchener campus of McMaster University. We told them our stories, touching mostly on what we are living with, the medications, side effects, diet and stigma. They set it up so that we would talk to eight to ten students in four separate groups that alternated every 20 minutes. We had to pace it so there was time to answer their questions.
What they wanted to know most was what our experiences are like right now, what would make life easier and what could they do differently. Truthfully, I haven’t had many bad experiences but with the permission from some of my peers I was able to share some of the horror stories they had experienced.
And finally, last week I was standing before some of my “other” peers, a class of 19 future PSWs. The HIV 101 part was a lively affair, reminding me of my own time in class. We allowed them to ask questions when they didn’t understand something, and they had several really good ones. A couple of questions involved clarifying some things they were told that weren’t accurate or current. There was one student that knew someone who was HIV positive so having her share what she could, I again felt validated that what we were presenting to them was needed.
At the end of these events we asked for feedback. Usually, a couple days later I receive my copies of the evluation forms to see how I did. To break it down, most of the students agreed that there should to be more education in the program dealing with HIV. Some felt that people with HIV were always unemployed, sick and one person believed we were contagious.
To address the “sick and contagious” comment, I had shared that I have never been sick one day because of HIV. When I had my test done, it wasn’t because I was sick, I didn’t have any symptoms. I had the test done because I felt I may have put myself at risk, that I was being tested regularly. I was also able to tell them that I didn’t need medications for seven and half years, my immune system was strong enough to fight off the virus.
There was only one comment about me being HIV positive and working as a PSW. While I was speaking, the subject did come up and I was able to explain that if I did my job correctly and used universal precautions that there was no way I could transmit the virus. While working in a factory, I made plastic products and used table saws to cut them and I did set-up work on the production lines. I would cut or burn myself on a daily basis but I knew I wasn’t a threat to anyone.
I explained to them that legally I didn’t have to disclose my status to an employer and they were not allowed to ask. However, the agency I ended up working for did ask and I was forced to lie or run the risk they wouldn’t hire me. I can only imagine the panic it would have caused had the wrong person known my status and use the information in a negative way. I wasn’t prepared to fight it out in court either if I felt they didn’t hire me because of my status. Now, if I was ever denied a job because of my status there would be a court battle.
The one comment that stood out for me was “His stressing, to remembering the persons dignity”. For me, it was the most important part of doing that work.
I left them with the message that one day there will be more than that one person in a facility living with HIV, there might be five or ten and not to be afraid when they see their status on the medical records. I told them that many people with HIV have returned to the workforce and because of the medications, today many are able to work. A person living with HIV could be the person who served them in a restaurant, someone who cut their hair, or sat beside them on the bus or stood in line at the grocery store, or someone who may be working amongst them.
Now, I’m hoping more doors open and allow me to step in and educate future healthcare workers who may be caring for us. The heathcare profession isn’t ready for us……..yet.