Image of blank computer keyboard with the words "BIG DATA" resting on the keys.

I Still Don’t Like This

A year and a half ago, my friend Crystal and I wrote guest posts for our respective blogs about an experiment we conducted on social media. Both Crystal and I stopped using the “like” button on Facebook to see if we noticed a change in our news feed, or perhaps a change in how we interacted with social media. I have not gone back to using the “like” button since we began our experiment in August 2015. For a year and a half, if I have enjoyed, or disliked, or had a reaction to something in my news feed, I have taken the time to write a comment. Or, I have simply scrolled on by if I felt no real need to comment at all.

This change caused me to be more intentional with social media. Instead of my use of Facebook serving as a giant time suck, I now go to the site with the intent to catch up on what my friends and family are doing. I can’t stop using the site since my employment responsibilities include managing two Facebook pages, and I also help administer my Rotary Club’s Facebook page. Last year, I agreed to help serve as a volunteer moderator for the Disability Visibility Project Facebook page. Do I spend more time on Facebook than I probably should? Yes, but I view the site as a tool which can help me maintain connections to friends and family when I might not have time for a phone call and I am too much of an extrovert to give it up.

Then last week my friend Tonia shared an article about Big Data which I read with interest. The article, which was originally published in Das Magazin, described how political campaigns use psychometrics (sometimes called psychographics) for “innovative political marketing.” Now more than ever, it is easier for companies to use a person’s digital footprint to predict how that person will act in a given situation. I don’t claim to understand all the research, but it makes sense that data gleaned from a person’s social media feed or digital activity can be used to make predictions about that person.

For example, if you were to look at my “saved” files on Facebook (which I use to bookmark articles I want to read when I have time), you would find articles from the Washington Post, New York Times, The Guardian, and several websites for media outlets such as PBS, NBC News, and ABC (Australia, not America). You would also see blog posts related to writing and crochet, and many disability blogs. A scan of my saved articles indicate about fifty percent of them relate to disability, twenty-five percent relate to writing, and the rest are a mix of articles about crochet, baking, musical theater and dealing with grief.

Based on just this information (remember, I have not provided any “likes” to analyze), one can fairly accurately predict I pursue writing, and that either I have a disability myself or am very active in disability circles. My hobbies (baking, crochet, and musical theater) are apparent. It’s no wonder that ads for Broadway HD show up with regularity in my news feed!

But, how are all those data points used by others? What else do I see because of assumptions made by analysis of my digital footprint? Which articles are placed in my view based on my social media activity? Would it change if my online behavior changed? I will admit, I never noticed a significant change in what I saw on Facebook once I stopped using the “like,” yet it’s possible there was a difference I just didn’t observe.

Do I think I have some semblance of privacy because I choose not to use the “like” button? Of course not. My smartphone acts as a transmitter, giving apps various information such as my location, how often I travel certain routes, what I search for on Google, and how often I win or lose at Words with Friends. Sure, I could opt out of using my phone as often or restrict certain apps to gain more privacy. But I use my phone to help me manage my personal assistant staff which limits my ability to disconnect.

For now, I will continue to steer free of the “like” button. I will also probably stop taking online quizzes – because how many times do I really need to prove I am an extroverted word geek who has a vast knowledge of show tunes? I think I’ve provided enough evidence of this to Big Data, especially since I just aced the “name the musical movie from one screen shot” quiz.

The Benefit of Being Present

Sometimes my boss asks me to attend events on her behalf when she is already booked or otherwise unavailable. I am always wiling to network with new groups and I enjoy learning, so when she asked me to go to a recent annual conference for a statewide association, I agreed. The particular session she highlighted sounded interesting and was pertinent to my job.

Early last Friday, I settled at a table in the hotel conference room with coffee and yogurt about ten minutes before the session. Others soon joined me and we exchanged the usual introductory chit chat. By the time the session started, the room was about three-quarters full of people doing exactly the same.

The speaker was excellent. His talk featured many “real-world” examples and included simple tips we could bring back to our jobs and start immediately. I am always grateful when speakers provide useful ideas which don’t require a huge budget or time to implement.

My seat at the edge of the room afforded me a clear view of most of the audience as well as the presenter. From my location, I could almost see the audience from the point of view of the speaker. What I saw disheartened me.

I expected to see alert faces, but instead I saw the tops of heads bowed down as the majority of people used their cell phones in their laps. One woman at the table next to me spent the entire session (45 minutes) emailing, texting or writing on her phone. A man at a table on the other side of the room was on Facebook for long stretches of time. I could tell because he was seated in front of a mirror and his phone was reflected over his shoulder in the image behind him.

Now, let me be clear. This was NOT a boring speaker. He was engaging, clearly an expert in his subject matter, and easy to understand. He was doing everything right.

The audience was not.

About half-way through the session, I realized he knew he had lost most of the audience. He began to single out those of us who were paying attention, maintaining eye contact with the faces he could see. I began to nod and smile frequently in an attempt to give him encouraging feedback. As a public speaker, I know how difficult it is to be in front of a group and sense none of the audience is “with you.” He continued on, but frustration was evident in his voice when someone’s cell phone rang at high volume towards the end of his talk. The culprit? Mr. Facebooker, who guiltily raced from the room as he answered the call.

These devices we rely on are wonderful. They connect us to friends and family around the world. In an instant, we are able to reach others during a time of need. We take photos and share them with elderly relatives who cannot visit in person. We can check our work email and our personal email, update social media, and order lunch all in the span of five minutes if we want.

But when we spend all our time looking down at our screens, we miss what is happening around us in the present. The woman who spent the entire conference session on her phone didn’t see the examples on the projector and didn’t hear the joke about the nurse. I know she didn’t hear it because she was the only person at her table who didn’t laugh and clap after the joke.

I’m not saying I have not been guilty of using my phone in what some might consider inappropriate settings such as a conference presentation or dinner with friends. Because I use my phone to help me manage the Personal Assistants I employ, there are times I need to respond to one of my employees instantly about their work shift. However, I make every effort to limit those interruptions and put my phone away so I can be present and attentive to whatever is happening around me. I can always check social media later when I have time to actually be social.

Yes, I know – it’s a novel concept, being social on social media. You should try it. Stop using “like” and start acting with intention. I did it. You can too.

There are many distractions in the world which make social connections difficult. Discretionary technology shouldn’t be one of them. Take the time to disengage from your device. You might be surprised to discover what you can connect with when you disconnect.

Thirty Days of Thanks Day 11 – My Living with MD Friends

As soon as I knew my trip to Australia was a sure thing, I began to plan. As I have mentioned before, travel logistics for the disabled adult are more complicated and time-consuming than for most non-disabled adults. While some people may be able to just get up and go, or have flexibility of flights and destinations, I require more advanced consideration.

I had been to Australia twice before my most recent trip, but for each of those visits I was using a manual wheelchair. I fly frequently within the United States using both a manual and power wheelchair. But my trip in March was the first international trip using a power wheelchair.

I began my research online, utilizing the connections I have made through a Facebook group called Living with Muscular Dystrophy (LWMD). The group is a private peer-support group of adults from around the world who are living with any of the neuromuscular diseases covered under the umbrella of Muscular Dystrophy or ALS. Group members discuss many topics including personal care assistants, medical equipment, travel, health care, and employment. The goal is to help one another navigate a world which is not always accessible for our needs.

Some of my first connections were with group members from Australia. Julie was helpful in answering questions about accessibility in Sydney. She explained the train system and offered feedback on potential options for finding a wheelchair charger. Sadly we were never able to meet in person while I was there, but this just means I have to make a return trip.

So many people offered tips on traveling internationally using a power chair. Cory Lee and Alice answered questions and referred me to others who might be able to help. Carol put me in contact with several people in Australia who provided information about renting an accessible vehicle and traveling within Australia.

There were others who had ideas about how to charge my chair, accessible restaurants, and where to find family assist restrooms in the airports we would be visiting. All of this knowledge made me more comfortable as I traveled.

There is much literature about the value of peer networks for marginalized populations, including people with disabilities. I have been blessed to have access to many peer support networks throughout my life. Because LWMD is based on-line, people who may have difficulty leaving their homes due to disability, lack of transportation or lack of adequate personal care are able to participate in virtual discussions. The collective knowledge and creativity of this group astounds me. When one group member asks a question, people are quick to respond with suggestions and ideas. As a rule, people with disabilities are some of the most creative people I’ve ever met. We have to be. It’s how we adapt to a world not designed for our needs.

To my fellow LWMD-ers – thank you so much for all you did to help me prepare for my trip earlier this year. I appreciate your insights and your information. Your creative ideas were perfect and you made problem-solving a breeze. When I needed support, you were my virtual cheerleaders. And when I had success, you celebrated with me. I am grateful to be a part of this unique family.

Photo of a statue of a man sitting on the back of a park bench, typing on an open laptop computer. Next to him is an open bag from McDonald's with fries and a burger. While he is absorbed in his computer, a squirrel is climbing up the back of the bench with the a hamburger bun in his mouth. Two women are seated near the statue. A woman in a pink dress sits in a wheelchair in front of the bench. Seated next to the statue on the back of the bench is a blond woman wearing a black and white polka dot shirt.

Not Liking the Like

Today I’m thrilled to share words from my friend Crystal Thieringer. I met Crystal online when I joined the My 500 Words writing group. From the start, she has been one of the most supportive, generous and considerate writers I have encountered. I was honored when she asked me to offer feedback on her novel in regards to her character’s experience with disability. Our friendship continued to grow and in July we had the opportunity to meet in person when I traveled to Montreal. Our first meeting felt like reconnecting with a forever friend – someone I had known for all my life. When she suggested we do a blog swap about today’s topic, I jumped at the chance to feature her here.

*2018 Update: Since the time of this original post, Crystal has decided to shut down her blog. Thank you to all my readers who kindly visited her blog to read my article. I will post it on my blog soon.

Not Liking the Like

I’m guessing my friend Tonia Hurst found the article that started it because she’s fond of algorithms and the things they seem to say. Tonia is also the friend who loves research, and has the kind of brain which can synthesize what it all means to our lives today. This is reflected in the historical novel she’s writing reflecting life in 1915. I’ll be thrilled to read such a novel, but the research to get there? My eyes pretty much glaze over and the words become the cartoon “mwah wah wah wah”s bouncing off the inside of my skull, echoing relentlessly until I’m certain I’d like to die.

Unless the story is brilliant. Then I’m in. My friend Denise, on the other hand, read the same article and got the point of it being an experiment and said, “We should try it.” We laughed on the chat feed, and all of a sudden the challenge was on: no capricious use of the “like” button on Facebook. In fact, no use of it at all. We also couldn’t simply apply “favorite” on Twitter without also commenting.  We would adhere to this one simple rule for two weeks. Simple.

I lasted one day.

I confessed my failure. Began again.

And lasted two days.

In my defense, both failures occurred in the middle of the night when I didn’t heed the often-heard advice to avoid looking at the computer screen. I’ve corrected that by making it harder to get to my laptop. Since laziness wins over curiosity, not surprisingly I’m getting more sleep. Independently, both Denise and I chose to continue not liking the like (for the most part). It’s been just over three months now, and I’ve no intention of changing back to my old ways.

The article focused on how the writer’s newsfeed changed. Truthfully, I haven’t noticed that. For me, the surprise came in the realization of how my conversations changed. The plain fact is I’m accomplishing as much, and possibly more, on social media than I did before and I am doing so with greater return on my time investment. What a win!

The notification feed showed me who was noticing what I posted. I replied to those who commented. Sometimes an honest discussion ensued—either in the post as part of a larger group conversation, or in a one-to-one chat. I also took the time to comment on what others had posted instead of the much quicker click to like or favorite. Many times, I became part of a discussion there too. After a month of not letting myself click, I realized there were some responses that I simply could not reply to, but I wanted to let the commenter know I’d seen it. This only happened during round-about conversations such as “so nice to see you last week” that were replied to even though I thought I’d managed to finish the conversation. Perhaps this person was  taking the same challenge of leaving no comment un-responded to, I don’t know, but it did seem ridiculous to keep going.

There were other times though, where friends and acquaintances merely liked what I posted. Of course, I’m grateful they did, but I found myself longing as I so often do, for interaction instead. Sometimes, social media is–well–quite anti-social, an opinion that has been the subject for several blog posts. I’ve also reposted or linked to similar opinions from others. Truthfully, such posts from me tend to come when I’m feeling particularly lonely or vulnerable. I’m an introvert. I write, and my best work is done without distraction. I don’t drive. I’ve spent a fair amount of time being ill and while I’ve enjoyed tremendous support, the thing people say to me most often is, “I didn’t want to call because I was afraid of waking you up.” In other words, it doesn’t matter how much I like my own company or that of my two cats and my very handsome and articulate husband. There are days when I long for other real people to talk to me, even if it’s on the other end of a computer screen. My biggest lament about social media is the cheapening of the word “friend”. Although social media sites suggest I have many, the fact remains that few of these people know when my birthday is, how many children I have, what current challenges I face, or what my hopes and dreams are. Frankly, without interaction—something a click cannot provide—these acquaintances will never find out. My true friends, however, will.

In high school, I never felt as though I belonged at the cool kid table, and often on social media, I feel exactly the same way. Social media has a culture in which I doubt I’ll ever be truly comfortable. “Conversations” with my teenage niece provide the perfect example. She will text me, I’ll answer the minute it arrives at my phone, and her response may come a minute, an hour or weeks later. The rules regarding personal interactions have changed, and it isn’t just in conversations with teenagers but with younger children who now have smart phones (I stopped my grand-niece from walking into a post recently, because her attention was focused on her new phone). It is, unfortunately, often true amongst adults who regularly talk with them and have adopted the culture.

Shortcuts are valuable. I use them myself. Still, I’ve yet to find a microwaved roast that tastes as fine as a slowly braised one.

The lesson for me is about intentionality. I slowed down, read more carefully so I could comment thoughtfully. I deleted a few responses where my flippancy got in the way. I tweeted responses with more care. I refused to respond to some posts where I couldn’t answer kindly.

The thing that astonished me was how often I used to click because I was bored. If I didn’t like it enough to comment, it was at best, not memorable enough. Was that the best I could do for myself?

Now, I spend less time on social media. During the first two weeks, I (finally) submitted a manuscript I’d been procrastinating and fretting over. I completed and planned more blog posts, and I also responded to an increased number of acquaintances’ posts and tweets. I had more meaningful interaction with a larger number of people. Best of all? I have a better idea of who my friends are—the ones I recognize, not the ones social media labels for me.

In other words, by refusing to like or favorite, I was more social. It’s enough reason for me to keep at it. For me, I’m going to continue not liking the like. Anyone care to join me?


Photo of a woman with short blond hair. She is smiling and wearing a black top with a red sweater, earrings and necklace.Crystal Thieringer lives in Ottawa, Ontario where many people think she spends her time writing stories. The truth is she studies the habits of hairy woodpeckers, cardinals and chickadees as they freeload from the feeders hanging from the tree outside her window. She is also one of Two-LIPs (live-in-persons) at the beck and call of Oliver and Sydney, resident cats. 

Before You Go…

Most young people don’t think about their own mortality. I can’t quote any scientific research to support my theory but my informal observations lead me to believe many people wait until a major life event (marriage, birth of a child, serious illness) or an emergency situation to have difficult discussions about disability or death.

I learned at a young age how important it is to make your end of life wishes known to your loved ones BEFORE you are facing imminent death. Having spent the first decade of my professional life working in nursing homes, I regularly interacted with people who had not had prior conversations about end of life care for mom, dad or themselves. I wrote my first advanced directives at age twenty-four. I completed a health care proxy the following year, and advocated for my parents and those I love to complete their own paperwork.

My aging parents are still living in the house they have owned for more than fifty years. Twelve years ago my five sisters and I honored them by coordinating a surprise 50th wedding anniversary party. There were many heated discussions and emails between the six of us about the menu and dessert list for this wonderful party. After the event, I handed my parents the health care proxy forms and told them I would prefer not to argue with my sisters about something other than a menu. I may have said something snippy, along the lines of, “I don’t care who you pick, but you must pick someone to act as your proxy in case something ever happens to you.” Two years later, when they were both injured in a car crash, we knew their wishes because we had those difficult discussions.

Making your medical wishes known is important, but how many of you have given any thought to what happens to your digital life after your physical life ends? Do you have a file of all your online or social media accounts and your passwords? Do you use a password manager to remember all your passwords so you don’t have to?

I will admit I have given very little thought to this but Thursday I read an article in my local paper describing how you can now appoint someone to manage your Facebook account when you die. I don’t know that I want my Facebook account – or any other account – to be maintained after I die. I have friends who have passed away and someone (friends? family?) must be managing their accounts because several of them are still out there in the virtual world. Should you want to explore your Facebook options, go to your “Security” page under “Settings” and look down at the bottom options for Legacy Contact. You can select to have your account automatically deleted after your death, or you can memorialize your account. Facebook describes memorialized accounts as “…a place for friends and family to gather and share memories after a person has passed away.”

At this point in my life, I think I want my social media presence to end when my life here on earth ends. My Facebook account is mine and I don’t think I want anyone close to me to have to face the burden of managing my page when I am no longer alive to manage it myself. But I can understand how sharing memories or tributes might be helpful to those coping with loss. Funeral parlors and newspaper obituary columns have been offering “legacy pages” for years on their websites. When my sister and brother-in-law died, the messages from friends, relatives, colleagues and former students were moving and heartfelt.

Since I read the article, I spent some time making notes and discovered between work and personal life, I have over twenty online accounts: Facebook; Twitter; LinkedIn; WordPress; SurveyMonkey; MailChimp; Amazon; Basecamp and many more! I knew I had a digital footprint but I never realized how big it was or thought about what would happen should I no longer be around to manage it.

So, I will be spending time this weekend updating my information, learning about password managers, and contacting those who have agreed to act on my behalf should I become incapacitated. They did well two years ago during a health crisis, and I’m confident they will manage my virtual legacy just as competently.