Hold on #Healthevoices16, this is going to sting a little…
It’s time to cause some trouble I’m thinking. Yes, let’s cause trouble for no other reason than those who will “get it” will be the ones who we need to bring about change. Those that are offended by this post should probably go back to high school and try again. Clique-Y-Ness in high school is understandable but still exhausting. Clique-Y-Ness in epatient groups and at epatient-based conferences is just wrong. So it’s in the spirit of causing trouble for the greater good I say hold on #Healthevoices16, this is going to sting a little.
Make no mistake #Healthevoices16, I know I’m just one male in a patient community dominated by strong female voices. I’m just one male advocate who has earned the right to share my thoughts and ideas not because I meet a particular market segment of a sponsor but because I’m a chronic patient with something to say. Now, thanks to 2 recent conversations I’ve had with real epatients from the cystic fibrosis and narcolepsy communities, I’ve come to realize I’m probably never going to be a popular or famous epatient advocate. I’m not going to have 20,000 followers or get hundreds of retweets every time I post anything. This does provide me with one distinct advantage; I get to concentrate more on the honesty and vulnerability of my message and don’t have to pay attention to crafting something that will play well in all time zones. I have no illusions of grandeur. To be perfectly frank, I’m completely all right with this realization too. As most people in my life would tell you, I’m more of a “do work” advocate anyway.
What exactly do I mean by “do work”? For example, one of the things I’ve done in the last month on my small platform is helping to spread the word of the amazing work that Emily’s Entourage (cystic fibrosis), A Fresh Chapter (survivorship of cancer), Project Sleep (narcolepsy), and #DIYPS (diabetics building their own artificial pancreas) are doing right now. All these different patient messages and groups, regardless of diagnosis or silos, help me in the end as a chronic pain and arthritis patient. Until this idea becomes the minimal standard of acceptance at all conferences and other epatient minds, nothing will ever change in our healthcare system I believe.
By your own words Healthevoices16, you are now “accepting applications from the broader online advocate community”. Considering that thousands of other patient advocates, along with myself, are already doing this on their smaller platforms I do not understand how this is not an accepted minimal standard of operation for an conference, you seem to be equating this idea to inventing the wheel or Norco. Further reading shows that you are only pulling from disease groups like rheumatoid arthritis, cancer, psoriasis, inflammatory bowl disease, or mental health. All these conditions need help and attention, don’t get me wrong, however they already have high profiles thanks to TV and the media. What about my friends with cystic fibrosis or narcolepsy, why aren’t they included for example? Why can’t your platform pull from any patient, regardless of disease, that wants to be a patient advocate? That’s a “first-of-its-kind” idea, not yours.
As a male patient advocate, I know the comfort that comes from being in a room full of other patients. It’s like being on home base in a game of tag or under a thick comforter on a freezing night. Patients, regardless of disease, definitely need a space were we can feel safe and free of judgment from others that choose to stigmatize us. Advocacy is an exhausting occupation and at times a ridiculous vocation to be a part of. That said, when the majority of your audience starts using phrases like “I’ve found my tribe” or “this is the place to be” with no mention of the rest of us who where intentionally excluded despite working with your audience on a daily basis felt more like high school to this male advocate than witnessing a patient conference. Being an intentionally excluded advocate I could only participate from Twitter so maybe I missed something, I will admit to that. That said, nothing sends a male in another direction than feeling like we are back in high school. One round of horrible acne and inappropriate boners was enough for this dude; I’m not doing that again.
Along the same lines of intentionally being excluded, I found it personally offensive when I saw a poster with the phrase wanting “to foster male voices” as a goal. Don’t get me wrong, there were female advocates at #Healthevoices16 that I believe have amazing ideas and thoughts on how to foster male voices. I would be honored and excited to help implement their ideas. These female advocates have earned the right to speak on this particular issue because they talk and work with all advocates regardless of gender on a daily basis, you have proven over the last couple of years that you don’t. From my point of view, you have chosen to only work with advocates that raise your own profile; that is just wrong.
Luckily for you Healthevoices16, I’m not just a smart-ass blogger filled with anger as the opening part of this post might suggest. I do come with suggestions and hope.
First, males tend to have short attention spans when it comes to work. We are willing to look past all this high school clique-y-ness just because we are passionate about the cause and want to contribute. That said you do need to meet us half way. Your conference needs to start pulling from the pool of all patients, not just ones that meet your arbitrary rules or market segments. Patients are not segments; we are people trying to live a meaningful life. Even if it’s not your intention, even the smell of high school drama will send potential male advocates back to our families, friends, work, or the worse possible scenario, not wanting to speak up at all. Just to let you know, this high school crap happens at big time conferences like Medx too, this isn’t something that is exclusively something I see with #Healthevoices16.
Generally speaking, males don’t care how we get through a door; we are more interested in working towards the greater good once through said door. For example, lets say that only 2% of all rheumatoid arthritis patients are males (I just made up the 2% for the purpose of this example, not sure if that is accurate), then make sure 2% on your RA patients in audience are males. Sure profiling like that is stupid and wrong, but at least you are trying to get all voices involved. We can always find better ways of raising the 2% once there all more males willing to share their voices publically.
Finally, I’m angry and upset because I want to help #Healthevoices16. I’m not sure if mouthing off on my platform is the right way in helping you bring about change, but it’s what I know how to do so I’m giving it a shot. The good news for you is that I’m both a cheap hire if you want to include me in this grand idea you are trying to create or if you dislike me, I’m more than happy if you choose not to hire me but steal all my ideas for your own good. I’m 100% serious about stealing from me, big fan of plagiarism when it comes to patient advocacy.
The reason I’m good with plagiarism, as odd as that sounds, is because anything that helps to raise the minimal bar of acceptance helps us all. All patients should be involved in your conference, regardless of gender or diagnosis, simply because you have no idea who they might be able to reach. As an advocate, I refuse to celebrate conferences just because they are conferences. Ideas like everyone included, patients are people not segments, and all voices matter, or tribes include more than just those in our momentary line of sight will bring about the necessary change we all want and need.
Even though I did say that I was personally offended by some of the stuff that happened #Healthevoices16, tomorrow is a new day to do work. Yesterday is over with and as long as we both can learn from yesterday, tomorrow is full of hope. That said, I can promise to continue to kick the ass of my friends that are currently involved in #Healthevoices16 in order to improve their skills and thus continue to make advocacy a place where anyone can express their voice, not just the arbitrary selected cool kids. Supporting individual patient advocates, that want to improve on an idea, should always be the ultimate goal of advocacy.