Welcome to Part III of my series on HIV, Aids and Social Media. It occurs to me that I haven’t really discussed why this should be of any importance to anyone, unapologetic nerds aside. So let’s look at that.

I start with the assumption that AIDS is a political issue and a human catastrophe. These two aspects of the epidemic are interwoven like vines on a wall. To be effective politically, however, requires several things: one, a clear message, two, the channels to distribute that message, and three, people to effect that distribution.

Twitter (along with other platforms), I’d argue, is almost custom-made for that purpose, if used with some clarity and consistency. There are no barriers to entry of the kind that characterize the traditional – or as we nerds call them, the dead-tree – media. The cost, obviously, is negligible. These factors, in combination, have already effected a revolution in our media universe, one that I’d hazard to guess has by no means run its course. Perception is reality, and if you can change perception, you will form reality itself. Implied in that statement is something else worth discussing some other time, namely the question of power, what it is, how you acquire and use it, but again, that’s for some other time.

In terms of the human catastrophe, having recently done quite a bit of reading on the early days of the epidemic, the what-if strikes me: what if we had had the tools we have today back in, say, the eighties? How many lives might have been saved, how much miserable, useless death avoided? We’ll never know, of course, but speaking strictly for myself, I do believe we have a positive moral responsibility to tell our stories. Because if we don’t, someone else will.

Which brings us to the meat of the matter: which stories do we tell? The following is based on materials from the New Organizing Institute in Washington, D.C., and represents some theoretical backbone to keep your social media message on target.

The Story of Self

Everyone has a story to tell. What I want to talk about here is how to turn your story into a narrative, to take that narrative public, and then to use it to change hearts and minds.

We understand our world by two means, with our heads and our hearts, or, if you prefer, rationally and emotionally. To change opinions, you have to communicate on both levels.

We don’t think our values; we feel our values. Often we don’t realize what we value in the world until we hear a story or witness an injustice that stirs emotions within us. Emotions inform us of what we value in ourselves, in others, and in the world, and they enable us to express the motivational content of our values to others. Because stories allow us to express our values not as abstract principles, but as lived experience, they have the power to move others to action.

Public leaders often encounter individuals or groups where mindful action is inhibited by inertia, fear, self-doubt, isolation, and apathy. The job of a leader is not to tell people to stop feeling this way but rather use storytelling to move people from feelings of stagnation to feelings of motivation - urgency, hope, YCMAD (you can make a difference), solidarity, and anger. The language of emotion is the language of movement—they actually share the same root word. Stories mobilize emotions of action to overcome emotions that inhibit us from mindful action. […]

Just as with a story of self, key choice points in the life of a community—its founding, crises it has faced, or other events that everyone remembers—are moments that express the values shared.  Consider stories that members of your group have shared, especially those that held similar meaning for all of you.  The key is to focus on telling a specific story about specific people at a specific time that can remind everyone – or call to everyone’s attention – values that you share. Telling a good story of us requires the courage of empathy – to consider the experience of others deeply enough to take a chance at articulating that experience.

What does this mean in the context of social media, where you have a very narrow space, both in terms of the amount of material you can broadcast, and of the time this material will be visible? Remember, Twitter only gives you 140 characters, a text message all of 160, and on Facebook, you’re best off with a maximum of 400. All of these platforms, of course, have timestreams, and you’re competing with other agendas, quite possibly worthwhile on their own merits, but they’re not your job. Your job is to tell your story, not mine, you have two seconds to do that, and are competing with hundreds or thousands of other users for my attention.

First, you’ll want to use unambiguous emotional terms: ‘anger’, ‘love’, ‘hope’, not more timid verbiage like, well, ‘like’ as a verb. Think of it in terms of theater: your words are setting a scene.

Once you’ve set that stage, go with action words: ‘click’, ‘check out’, ‘read now’, ‘breaking’, and provide something your readers can do. That’s usually a click-through to something, and you want to test that link before you send it out; sounds deceptively simple, but you’d be surprised how often that gets fouled up. Psychologically, being presented a non-working or worse, misleading link does one thing: it pisses people off, because you’ve just wasted some of their time, which you obviously don’t respect.

Create a sense of urgency, and don’t be afraid to tug at the heartstrings; we as a species have them for a reason.  If I don’t click on your link right now, I’m going to miss out.

Let me close with a final thought: I’ve been writing, tweeting, facebooking (yes, that’s a verb), about HIV for about two years now. The most difficult part of the process, assuming you have at least some gift for the language, is taking the first step and saying, “Yes, I write from the perspective of being affected”. And I’ll freely admit it’s not for everyone.

But the simple fact remains that the virus is here to stay, and is a relevant topic. The LGBT rights movement, at least here in the United States and to its pronounced discredit, has fallen largely silent on the subject.

So it’s up to people like you and me to change that. Allow me to suggest that the only way to do so is to never shut up. So find your story of self, and tell it.

This entry first appeared on Denis’s own blog Half a Lifetime. 

Social media is truly an oddity and each day I learn how it affects us, and the world we live in. It is responsible for trends in media, fashion, literature & thought. It has changed how we learn about things, how wars are fought and it has made the world an exceptionally small place. However, recently I have found myself questioning its place in my life and what it has done to my way of thinking.

Numbers seem to be very important when it comes to Facebook and Twitter; for some it's about collecting as many as possible and for others, they wish to curb them to limits they set themselves as manageable.

Maybe it’s only in cities the size of London that tweetups are as feasible and popular as they currently are. But I have found myself over the last year meeting up with many of the people who follow me and whom I follow. All great people, wonderful to have a drink with and a good old-fashioned giggle. But the flip side is that you then go on to discover that their online persona is not the same as the person you met last Saturday for a drink in Soho. Some are full of piss, vinegar, fire, and anger. Every tweet is filled with vitriol and attack, often at people they have never met, or worse yet, at people they have met, don’t like, but to hide the fact from the person they invent code or hash tags, so they can publicly berate said person without them being any the wiser, not really ver'y big and certainly not very clever, and funny? Well to my mind no, its not - it's cowardly.

There are also those who treat twitter like Grindr or Scruff. Nothing wrong with a bit of flirting, I know you’re thinking, and I agree. But when every single comment, no matter how innocent, gets a reply with such crass innuendo it makes you cringe. It becomes dull. I have even had to ask personal friends to contain themselves over this, as it just doesn’t sit very comfortably with me.

Last week I guess I had an epiphany of sorts, having had a series of unproductive meetings with very rude people in my industry and a number of personal friends doing what I can only describe as trolling on both Facebook and Twitter. I got angry, mostly with myself for sitting waiting for someone to give me permission to live my life the way I wanted, to achieve what I want in my career. And to live my life in a manner that I felt was authentic. I started to read the book ‘The Velvet Rage’ once again, a book that is so powerful and when I first read it a year ago really made me look at myself. On re-reading I discovered that a lot of the promises I had made to myself I had failed to keep. Promises about honesty and authenticity and being true to myself at all times. It made me think about many things, my career and my social life amongst others. It made me realise that I had become timid and lacking in integrity. I wouldn’t call people on things I disapprove of to protect my numbers or for fear of losing a friend.

Over the course of the weekend I became more and more filled with anger at myself, so I started a cull on facebook. Two ‘friends’ had taken me to task, one an old acquaintance who took issue with me over supporting equal marriage. This guy is an anarchist at heart and I respect his opinion that to him it means nothing, but he couldn’t afford me the same respect. So he deleted me as a friend and blocked me so I couldn’t respond to his vitriolic attacks. Another friend, knowing me for a long time and also very well, called me stupid for posting memes about depression. It made me realise that if he was a true friend he actually would have asked if I was OK as he might have read into the memes that maybe i was struggling. So in turn I deleted him and later that evening, after a few drinks I deleted a lot of other people on my friends list on the same site, people I barely knew or never interacted with. It then got me to thinking “what do I use Facebook for?” It's not for keeping in touch with friends 'cause I have the phone for that. It's certainly not to look at pictures of the dinners they have cooked (although I have been guilty of this myself). I had actually gone into their profiles to discover how to stop making them appear in my newsfeed, so essentially I was using Facebook to play bejewelled blitz on a daily basis. But I hesitated and delayed deleting my account for a few days, and in those few days I thought about Twitter.

Now I love Twitter, I have met and connected with more people through Twitter than I have in any other arena, but of late I had found myself muting more and more people, I was bored with their tired diatribe about what they would do to each other sexually cluttering up my timeline, I was muting hash tags so I didn’t have to view tweets about certain subjects with which I had no interest. But I discovered it meant that people were totally vanishing from my circle. The number of followers I had was creeping towards the holy grail of a thousand, just 19 away in fact, but the number of interactions I was having was dwindling.

Then yesterday I got a message on facebook from someone sarcastically thanking me for unfollowing them. I thought they meant on Twitter and checked to find I was still following him on there. Albeit, muted. But it turns out I had deleted him from my friends list. I don’t remember having done it, must have been when I was under the influence earlier in the week. It got me to thinking about the number of people I was being inauthentic with, not counting myself. It also turns out it had become a topic of conversation on Twitter with people I had stopped following as their tweets were of no interest to me. I don’t want or need to see pictures of someone having sex with their BF or read nasty tweets sent from and to people who had never met but taken a dislike to each other.

So yesterday I deactivated my Facebook account. I still have a work one so I can still play blitz and I also removed my Twitter account as close as it was to the magic number, and created a new one. I have followed all the people I enjoyed meeting and interacting with once more. They’ve not all followed back or accepted me as a follower which I guess is ironic, and steered clear of those that raised my gall or I just had no interest in connecting with online.

Some of them are great fun in person and I hope we can maintain that in the real world but I think it’s doubtful to happen that way, I hope to reconnect with those I had interesting conversations with or things in common, but for now it is not about quantity

The following was transcribed from the taped broadcast on the CBC Q web site.  You can hear the broadcast by clicking on the June 28 show here. 

The CBC is Canada's publicly funded broadcaster. Q is the daily morning arts, culture and entertainment talk show hosted by Jian Ghomeshi.

This is how Jian opened today's show.

Opening music . . .

Jian Ghomeshi: Well, hi there.

Happy Friday.  And it’s high time for Pride, in Toronto that is.

There are many celebrations and events in the LGBT communities of the world at different points in the calendar, but this week, it is Toronto’s turn. And, as you may know, the Toronto Pride celebrations are the biggest in the country and recognized as one of the major events of their kind on the planet.

Everything comes to a colourful crescendo. I’ve often called it the best day of the year. A sense of collective, family, love, pride and awareness of community.  And in that spirit, maybe it is time to reflect on the past year or so in LGBT culture and politics.  It’s been quite a period, capped by U.S. president Barack Obama’s endorsement of same-sex marriage – a big first – some would say an overdue endorsement, but maybe also a decisive one that not everyone was expecting.

There’s been the continuing expanding embrace of LGBT by corporate interests, not only in their canny sponsorship of big Pride celebrations but in ad campaigns and product tweaks, from the Oreo with the rainbow filling to J.C.Penney Father’s Day ads with the two dads. And be honest; no doubt it may be in their economic interest but it still feels like a major step for the corporate world, the normalization of cultural diversity and LGBT.

There has also been significant movement to save the lives of young people who are facing the prospect of bullying, isolation or even suicide because of their sexual orientation on the spectrum. Dan Savage’s “It Gets Better” campaign and the ”You Can Play” project in professional sports have come to international prominence. And comprehensive ante-bullying legislation for schools here in Ontario has been passed, even in the face of the headline-grabbing debate between church and state over the status of gay-straight alliances.

We must not forget more stars coming out too – and in pages of the comics, Green Lantern.

It’s been a banner year in many ways. But as we also know, there are still haters, bullies, others out there who would stand in the way of basic human rights for every citizen. Maybe, though, there has been more good news than bad on this file lately. You know, it’s kind of serendipitous that Toronto’s Pride festivities and parade in particular will fall on Canada Day this year.

As we celebrate the birth of our nation, call Pride a reminder, perhaps, of the importance of embracing our closely held Canadian values of diversity, of respect.  Here’s to welcoming openness, to tolerance and celebration – in a country of rainbow colours through and through.

I’m Jian Ghomeshi.  Happy Pride, kids!

#HIV – Twitter 101 for people with HIV

(This is Part 2 of a series on social media and HIV. Read the first installment here. Part 3, Twitter 102 – Twitter as an information channel, coming soon.)

If you’ve spent more than a few minutes online – and if you’re reading this, odds are you have – you’ve probably seen it: ‘Follow me on Twitter’, or ’Follow us on Twitter’. Usually, those words link to another web page, one usually hosted on, you guessed it, Twitter.com.

Following in this instance means something different than trailing hot boy/girl X around the bar. What it means is, simply put, that you sign up to receive short text messages – coincidentally limited to 140 characters – whenever that person or organization deems fit to send such a message. Those messages are cutely called ‘tweets’. If you call them ‘twits’, by the way, you’ll be kicked off the Internet.

Tweets are, in the online universe, a haiku next to the Iliad of, say, The New York Times. They are, of necessity, short; there are roughly half a billion users who send a total of one hundred and seventy five million tweets a day. That’s maybe twenty five billion characters a day; by contrast, the Bible has only three and half million. In short, you’re looking at an enormous amount of data, enough to require a biblical lifespan and then some to read them all. That being unlikely, you’ll need to edit and choose what you look for. More on that in a bit.

So how do you use Twitter, especially as a person with HIV or AIDS?

If you already have an account, you can skip this step; if you don’t, click on over to Twitter and create one. You’ll need a valid email address and a good, memorable password.  Many people use their full name or a recognizable nickname; if you value your privacy, that’s perhaps not the best idea. Personally, while my main handle (that’s what these accounts are called), @MichaelBouldin – is indeed my real name, for a while, I had a separate handle just for my HIV tweets. You should keep in the back of your mind that tweets are public, unless you affirmatively choose otherwise by deleting them outright or ‘protecting’ them, which simply requires that you approve whomever wants to follow or read you. If you do decide to tweet under your real name, it’s a great idea to have a profile picture of yourself; that will make your virtual presence more real and relatable to other users.

One you have that account, you’ll see several new and interesting things. The first is your very own Twitter page that lets you do nifty things: add custom backgrounds, post a short bio, your web site, and put up that nice head shot. If you take a look at my Twitter page, you’ll get the idea. And remember, none of this is rocket science. Twitter’s audience is, statistically, less well educated and younger than that of Facebook, for example, and the technology reflects that awkward fact. On the plus side of that ledger for advocates, however, is the simple fact that we really do want to be talking to younger people.

For that, Twitter is perfect.

To get started, you might want to look for people you know who are already on Twitter; friends, family, the usual drill. Then you can get more granular and do a subject search, say, for HIV, or gardening, or your hometown, whatever interests you. Odds are, there are quite a few people you’ll find just that way. The Twitter site itself has, at the top of the screen, several options to help you; they’re titled ‘Connect’ and ‘Discover’ respectively, and they help you do exactly that. These are geo-tagged, in part to help users discover one another.

The next step is to follow whomever you’ve found, and presto, your stream – that is, the tweets you’ve signed up to read – will begin to fill up. Pretty soon, you’ll want to wade into the conversation and send your first tweet; to lose your Twitter virginity, as it were. Trust me, it’s not quite as bloody painful as the other kind, and takes less time and effort.

So, now that you have your account, some followers, and are following some folks yourself, it’s time to go pro.

One of the first things you’ll discover is that the Twitter site is not satisfactory for more than extremely casual use. So you’ll want to get what’s called a Twitter client, i.e., a standalone piece of software that you can run off your desktop, your smartphone, laptop, tablet, whatever. Two Twitter clients are Tweetdeck and Twitter’s own stand-alone app; both are free. With Tweetdeck – and many other clients – you can manage your Twitter, Facebook, and God alone knows how many other accounts, all in the same interface. A word of caution: if you maintain different accounts for different purposes and audiences, make sure you send the right content to the right destination.

Another thing you’ll notice is that there are odd number signs – # – attached to a given term. Those are called #hashtags, and are very useful when you want to participate in a very specific discussion – such as on #HIV or #AIDS. To use a hashtag, just type it into the body of your tweet; some clients will even autofill a hashtag or suggest popular content-related tags. A great place to discover popular tags – on a scale from global to neighborhood – is TrendsMap.

Not all tweets are created equal. There are tweets, mentions and the big prize, retweets. The latter are when someone takes one of your tweets and simply rebroadcasts it to their own followers. Bingo, you’ve just reached an entirely new universe of people with your message. The more you yourself retweet, the more other users will notice you, by the way, because Twitter alerts its users whenever that happens.

Speaking of followers, there are several good ways to find them: for example, check out directories like Twitaholic or WeFollow. Get listed; you can even create your own lists. Topically, you’ll want to save searches whenever you can; that’ll spare you some typing and, because all of this moves at the literal speed of light, precious seconds. It also lets you find users interested in the same subjects you are (they can find you in much the same way, of course). A lot of folks, coincidentally, follow back as a matter of routine, so that’s another growth tool. A great idea is Follow Friday – a tweet with the hashtag #FF sent, wait for it, on Fridays– where you simply tweet out new followers, interesting accounts, whatever strikes your fancy. #FF is a nice way to simply acknowledge other people, the equivalent of a friendly nod on the street.

As with tweets themselves, not all followers are created equal either. Social media are in principle very egalitarian; you don’t need a fancy degree or a Swiss bank account to use them. That said, other users will judge you, sometimes rather harshly, based on whom you choose to follow yourself, and who follows you. A good discussion of this concept is here. Simply put, some accounts are spam, for pornography – on the Internet, imagine that – or just dolts who will broadcast their latest bowel movement to an anxious world. In real time. If an account like that follows you, and they will, don’t be shy: just block them.

Standard practice (and my approach as well) is to take a look at the page of whomever you’re thinking of following. Look at who they follow and who follows them. This sounds a bit snobbish, and in some ways it is, but as with all things in life, you’re judged by the company you keep.

When and where do you want to tweet? Anywhere and everywhere, but after work hours and on weekends, volume is lower, so you’ll have a greater chance of being noticed and  shaping the conversation. Statistically, your tweet will be seen in a feed for just a few seconds, so you want to make those seconds count. It’s considered good practice to tweet a few times a day, more if you’re at a special event. If that’s the case, ask around if there’s a dedicated hashtag; odds are, there will be, and people will be following it.

What do you want to tweet? There is no one answer to that question, but some basic parameters would be: tweet your blog, if you have one. Tweet interesting news stories, and do include the link (if that link messes up your character count, you can shorten it here). Quotes generally do well, as do pictures. If one of your tweets does exceptionally well, don’t be afraid to re-use it; this repetition is standard practice and not considered bad manners. Unless you do it too often, so use good judgment. Another very sound practice is to check your facts; just because something is on the Internet does not make it true, so do some basic due diligence.

How do you tweet? The first rule to remember is that you only have 140 characters. That’s not a lot (there are services like Twitlonger for the clinically verbose, but tweeting being an art as much as anything else, tweets longer than the norm are frowned on by the cognoscenti). So train yourself to be pithy and incisive. Find your own voice. Be interesting. Be consistent thematically, but leave some room for the unexpected. Use abbreviations where possible. Choose short hashtags. If you can, tweet at other users; for example, to send a tweet to yours truly, put ‘@michaelbouldin’ in your text. I will see that. It’s fantastic if you want to annoy someone.

As do all social spaces, Twitter has its own peculiar etiquette. Some of these rules are just plain common sense. For example, never beg; if you want a retweet, just let your words work their magic. Never beg for followers either (or, God forbid, buy them outright, as some services will let you. It’s a waste of money and looks awful). Don’t tweet under the influence (unless you’re very funny). Make a point of engaging in conversations and acknowledging other people; this is, again, just basic good manners. Many people, and they know who they are, think of social media as megaphones; they’re not. They’re conversations, so act accordingly. One thing you should absolutely never do is set up an auto-responder that sends some generic drivel-tweet to every new follower; that practice, while not entirely uncommon, is considered the Mount Everest of boorishness. When you get a new follower and are sufficiently excited, just tweet directly at them; it may sound like a small thing, but the devil is in the details.

Lastly, boys will be boys, and we compulsively measure everything. A great tool to measure your impact on social media in general is Klout. If you have so much as a Facebook account, and who doesn’t, Klout has already assigned you a score from 0 to 100. This score is based, to simplify it somewhat, on the volume of activity you generate in the social media universe. So you really want to have a high score; the higher your score (and the more followers you have, of course) the more seriously you’ll be taken. Believe me, people watch Klout scores with all the intensity you might expect to find directed at young, unattended children. If you have a score under forty – the average is twenty – you’re not going to make the door in some nightclubs; I shit you not. There are more actually relevant drawbacks, but you get the idea: bigger is indeed better.

So, now you know what to do. Tweet away. Coming up next: using Twitter to find and disseminate information. Stay tuned. 

When I started blogging, I wondered if I had anything to say. Over the last year and a half I’ve learned that I have inspired others to do it as well, so I guess I did and now I feel I haven’t given up my torch but I have lit the torch of others. 

It was a raining when I woke today, yes, at12:21 this afternoon. Lazy? Maybe, but as I wrote recently, I have a new medication that is helping me get more sleep. Some days I have to set the alarm to get up and go help my mom who isn't doing very well. On those days I tend to be a little groggy because of the meds. I just want to crawl back into bed. By the end of those days I crash and if I don't have to get up early the next day.........I don't. 

Today, I am in another of my funks where I can't find much to write about. I have had 65 of my blogs published here on PositiveLite.com and another 20 for  the AIDS Committee of Guelph so it gets hard to find topics that I haven't already covered. Sometimes the editor (Bob Leahy) here will suggest a short list to me, and those suggestions have produced some of my posts. Another source of ideas I draw from is from other writers here, or people I find on Twitter. I read everything that gets published here and sometimes I will follow the writers’ personal blogs as well. 

Living with HIV, we all have our stories and I believe it’s important to share them with others. We may not connect some of the things we are experiencing to be a symptom of living with HIV. When someone else writes about an issue I am experiencing, often I find myself saying, "yeah that is what I see happening to me". I could search the internet for the information - there are many great sites for HIV - but I think the best teachers are people living with HIV. 

Because of my age, I tend to search more for information concerning HIV and aging. I try to find out as much as I can and share what I am experiencing. Many of my issues can be attributed to the normal aging process, like the hair growing out of my nose, on the tips of my ears, the eyebrows climbing up my forehead. Those things can all be controlled with many of the new grooming gadgets out there. The aging that goes on inside can be sped up by HIV.  I need to take stock of everything and anything and report it to my doctor. Sharing it online with other HIVers I can get some feedback and more personal information and support. 

Lately, through social media, I am finding many new bloggers and activists who are much younger and many are women. A few of them have joined us here on PositiveLite.com as well. Their contribution is a good thing because many of the new infections are being found in those two groups, young gay males and heterosexual women. As I read what they share I see where I was two years ago,

I am assured that as I pick my battles, there are others willing to take up the fight to end stigma, try to stop further infections of HIV and inspire others to join them. There can be a downside to it, some are facing a lot of messages of hate and stigma directed to their social media sites by ignorant individuals who have nothing better to do. I’ve learned to respond to it by saying, “If you’re going to insult me, please do it intelligently”. 

I will continue to carry my torch, maybe it will be a smaller one, I know I have lit the torch for a few others and it has been expanding from some of those people. If more people can find the courage to come out and tell their stories, it will only help us all. 

A plug for PositiveLite.com here, They are always looking for new writers. I started here over a year ago, there were maybe a dozen people writing. Since then we have been through two sizeable growth spurts. PositiveLite.com is now Canada's best online HIV magazine for and by people living with HIV. There are more than 20 writers now and there is new content each day. Much of it is "you're seeing it here first" articles.

I really appreciate them taking me on and encouraging me to do this. It has helped me in more ways than I could have imagined. I have learned so much from everyone involved here.

Well look at this, I started out with nothing, or next to nothing but I am just finishing up my 66th post. Now what will I write about next?