So, I'm finally back from #HealtheVoices17 and after a full day of rest, I am still at a lost for words on how to summarize or describe my experience there. There were tears, inside jokes, tons of laughs, and a lot that I learned that will enhance the impact I have in my social media advocacy.
One thing is for certain in the goal I set for my attendance at HealtheVoices this year. I did not want to be the same person leaving that I was coming in. Coming in, I was stressed from family issues, burned out from advocacy/policy work, and feeling overall depleted so I was running on autopilot. The first day activities with the #PurposefulConnections HIV Summit knocked all of that out the gate as soon as Rhonda Waters of Johnson & Johnson's HPI (Human Performance Institute) had us re-evaluate our values and get to the core of why we do advocacy in the first place. So, walking out of the conference on our last day Sunday, I was definitely felt back to a empowered place of authenticity. I felt more rooted in my passion.
I just want to share with you five things I have immediately implemented or an in the process of adding to my advocacy toolkit.
1. Add a medical disclaimer to your posts or website. I spoke with Benjamin Di'Costa, a fellow HIV advocate and among many other wise social media tips he gave, I realized this one was such a simple one and I had overlooked it. It protects advocates, while we are patient experts, we are not always medical professionals and are only speaking from our lived and learned experiences. There are a lot of examples throughout the internet that can be tailored to fit the needs of any advocate. I have now placed this disclaimer throughout my website because what I may advise may not always be what I know for each individual person that reads my content. I want us both to benefit from this relationship and for no harm to come to either of us.
2. Making videos is easier than one thinks. When I attended a session on creating impactful video for advocacy last year, Josh Robbins had amazing tips on scripting, lighting, audio and apps to use that were super inexpensive. Cameras intimidate me eventhough I know that using video is effective, so I didn't fully implement his tips or take them seriously for my work at the time. This year, he gave great tips on the same issues, but hearing it again as well as other attendees experience using what works for them, I have now found that I can afford and accomplish bite size videos that will help me in HIV advocacy. Lilly Stairs even posted in our HealtheVoices Facebook page, this great app in iOS called Clips that does closed captioning so followers that are hearing impaired can access content. It's FREE! It's EASY! It's FUN! I'm starting out with that one and hope it takes me to another level.
3. Legislative advocacy is critical. In a session by Type 1 diabetes health advocate Christel Aprigliano and Public Affairs Council expert member Nick DeSarno, a wealth of information was shared on how to effectively speak with your congress members, their staff and if they refuse to host public forums, there are effective ways to "out" them that will help bring the importance of your cause to light. One thing I think is effective is to attend their campaign events, town forums or party specific fundraisers and ask for a photo opportunity with them. Be sure to wear a shirt that speaks to your cause in a bold statement, then post said photo to social media with whatever policy oriented hashtags or messaging is best suited for the position you want them to consider for your cause. I'd even go the extra mile and send them a copy of the photo as a thank you card. Being reslilent in policy work is the key. Decisions in legislation are not made overnight, building relationships is key - and never, ever give up.
4. Protecting your followers is just as important as protecting yourself. This was probably most impactful for how I view my social media presence. I never have a problem stating how naive I can be and this was one of those times my ignorance was evident. My method of defeating HIV stigma is to put it all out there and dare anyone to say anthing, not taking into account that some things I post may be triggering for others. It is my responsibility to be considerate to that. I'm grateful to Kirsten Schultz and Dr. John Grohol for sharing tips on how to handle that during our Privacy in the Public Eye panel. For example, if you are posting an image of your lab work experience on Facebook, the appropriate way would look like this:
There are many variations of what words can be put in place of "trigger warning" such as specifically what is mentioned, i.e. "may contain an image of blood", "warning: do not read if needles make you uncomfortable", etc. When you place a specific amount of space in a Facebook post, it automatically hides it from the viewer with a "See More" prompt which I used to find annoying, but now see how it's purpose is incredibly beneficial to protecting my audience.
5. Not being a 501c3 does not limit my advocacy work. Thanks to Janssen Pharmaceuticals, Inc., the Community Foundation of New Jersey and online patient advocates everywhere - we can now apply for a charitable grant that engages, informs and empowers patients in our community as well as combatting stigma and isolation. The grant sizes will range from $1,000 - $5,000 and will be held to a project completion in September 2018. This was amazing news as I (like many others) are full of ideas, but don't have access to funding and feel limited in my advocacy reach. There are certain restrictions and qualifications with this grant that you can read about here. I am incredibly grateful to the staff of Janssen and The Community Foundation of New Jersey for providing this opportunity to so many amazing advocates that are truly further empowered to change the world.
This is a short list of things I have learned and put into practice in the past two days after HealtheVoices17. With the network of friends I've established, I know that there will be more and so far I feel more deeply rooted in the work around me, thank you just isn't enough.