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. You can read her original post on my blog here, and my post can be found on her blog here.

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 Will to Write

Two years ago, when I started this blog, I felt guilty calling myself a writer. I worried people would laugh at me, not take me seriously. I had to talk myself up each and every time I hit “publish” and put my work out into the world.

Fast forward two years to this September. I started a new memoir writing class with my friend and mentor Marion Roach Smith. I committed to finally working, really working, on the book – the book I promised my late sister Mary Jane I would write. I wrote daily, sharing my work each month with the others in my class. Finally I felt comfortable saying the words, “I am a writer!”

Confession time: I haven’t written in two weeks. Life has a way of changing the best laid plans. At least, it always seems to happen to me.

My beloved father passed away on December 14th, giving me a healthy dose of perspective just as I was starting to get mired in pre-holiday stress. In an instant, I went from “How will I ever get the rest of my cookies done?” to “How will I get home to Mom and my sisters?”

After the funeral, the family gatherings, the tears and the laughter, there was still Christmas. And work. And life. And a book still waiting to be written.

That is how it happens. We gather with loved ones to offer comfort and share memories. Then, we return to our new normal and try to make our grieving selves fit back into our prior routines.

Somehow, I never manage to fit.

When my sister Mary Jane passed away five years ago today, I learned how easy it was for me to cultivate a relationship with grief. At the time, I wasn’t aware it was what I was doing. Now, I recognize the listlessness and lack of focus.

I am on vacation this week. Once again, my sister Caroline has agreed to let me crash at her house for the week. It was supposed to be a week of writing, crochet and relaxation.

Every day this week I have sat to write, and nothing has come. Well-meaning friends have offered me encouragement. Just journal. Write to a prompt. Set a timer and write for just ten minutes.

I started this post two days ago. Today, because I made Mary Jane a promise and I always try to keep my promises, I am finishing something – anything – just to say I am writing.

I know enough to know that I need to listen to myself when I don’t have the will to write. It is fine to take a break, to grieve, to allow myself to retreat and take a respite.

The trick is to not encourage myself to stay in that dark place, to not allow my voice to dwell in the grief and sadness in my heart. Even though I may want to sit and mourn, I know how easy it is to become mired in the sorrow and not move forward towards the goal.

I am a writer. It is what I do to help process the world around me. I think in words, stringing thoughts together in my head whenever I have moments to myself. When I don’t write, I feel like part of me is not fully functioning.

My goal today was to write a post and get it up – no matter how long, even if I think it’s crap. My goal tomorrow is to write 750 words about my experiences as a former poster child.

Goals are good. They provide focus when you feel lost. They can be modified when life throws you curves. Sharing goals helps me remain accountable. Hence, I state them here so I know someone else is aware of my plan.

I’m not thinking beyond this week. I’ll spend the next few days playing with my sister’s dogs and crocheting in front of the fireplace.

But come next week, I’ll write again. Because I am a writer. And writers write.

Unruly Underwire

Last month, I took part in the 2nd Annual Brava! This event is a fundraiser for the YWCA of the Greater Capital Region. The evening features local writers performing readings on the subject of brassiers in their lives. I read my essay “Just the Bra for This” last year, and was honored to have another essay selected by the jury for this year’s successful event. Thanks to my sister Sandy, who was also one of this year’s featured writers, you can watch a video of me reading this essay.

Yes, this is a true story. Yes, I still talk to Don and he knows I shared the story publicly. I know I am not the only wheelchair user who has had odd things stuck in her wheels. Since I shared this video on my Facebook page, friends have shared their stories of underwear, hair ties, socks – you name it – stuck in their wheels. To my knowledge, I am the only one with an unruly underwire though.

Unruly Underwire

My longest romantic relationship started because I was being held hostage by a bra.

When Don first called in late September 2001 to ask me on a date, I was using a lightweight manual wheelchair. It had removable armrests, swing-away footrests and weighed less than 22 pounds. It was everything I wanted and needed from a wheelchair at the time.

The only part of the chair I didn’t love was the front wheel, or caster, mount. My front casters were four inches in diameter, held in place with a fork mount allowing them to spin and rotate easily, too easily. Things were always getting caught in them – hair, yarn, string, even fake cobwebs at Halloween.

I don’t really know how it happened. I was sitting in my bedroom, sorting laundry when the phone rang. The basket tumbled off my lap as I dashed across the floor to grab the cordless headset. Don said hello as I backed up to collect the wrinkled shirts and pants now on the floor around me.

Except, I didn’t move. My front wheel was stuck, not rotating, not turning, nothing. I almost flipped backwards as I uselessly struggled to reverse my chair off the pile of clothes. Looking down I realized something was wedged into the caster fork, through the front wheel.

My pink underwire bra, a favorite because of the fit, color and comfort, had somehow become twisted up inside the wheel. The wire itself, which had been threatening to come loose from its casing for weeks, was now wedged across the wheel, effectively locking it. My attempts to move and turn had simply lodged the bra firmly in place, preventing any wheel movement whatsoever.

I sat listening to Don, wondering how to bring this up in conversation. How exactly do you tell a male stranger that you are held hostage by a bra? A bright pink bra?

Um, excuse me Don. You don’t seem like a psychopath, and I’d like to talk to you, but there is a bra stuck in my wheelchair so now’s not the best time for us to have our first conversation.

Yeah – to pull that off without scaring a guy obviously flirting with me, who is interested in me, and who called me? As a rule, men didn’t often pursue me, so I was not going to jeopardize a potential romantic connection just because of an unruly underwire!

I continued to talk with Don as I frantically tried to come up with a strategy to set me free. All my adult life, I have joked with friends that living with disability has made me a female MacGyver, the TV hero who could get himself out of any sticky situation. Put me in a tough spot with very few resources, and I can problem solve my way through just about anything. But try as I might, I could not release the bra from the wheel. I twisted and contorted my body, bending forward, trying to pull the strap to move the wire while still maintaining a grip on the phone.

Yes, I love visiting bookstores.

I grabbed a pen off my dresser and attempted to push the bra out through the hole in the wheel.

No, I haven’t been to the new Barnes and Noble.

I leaned over the opposite way to take weight off the wheel praying to get it to spin freely, all the while making what I hoped were appropriate responses and encouraging remarks to Don.

Coffee on Sunday? I think that sounds great!

After an hour I realized the only way to liberate myself was to sacrifice the pink underwire and just cut the bra loose. I could see my scissors on the desk next to my bed, four feet away. Somehow, I had to get them.

So, I removed an armrest and used it to push the laundry basket across the floor to the desk. Turning a dirty pair of pants into a lasso, I tossed one pant leg over to the desk. The pants and the scissors slid and after four attempts, fell into the laundry basket. I dragged the basket containing the coveted scissors back to me with the chair armrest.

Snipping the offending undergarment into multiple pieces, I laughed in vindication. I wheeled backwards, taking in the tattered pink satin scraps scattered on the floor like cotton candy confetti. I wielded my shears in victory as I tossed the misshapen underwire into the trash.

MacGyver’s got nothin’ on me.

30 Days of Thanks Day 18 – Guest Post by Debbie Simorte

My guest today is Debbie Simorte. I found Debbie’s blog, Writing the Life Chaotic, when I joined my first online writing group two years ago. Whenever I need a laugh, I turn to Debbie’s writing. Often, my comments in response to her posts are variations of, ‘So – you’ve seen my small town in action?!’ Debbie’s honest critique of my own writing has made me try new ways of expressing humor while crafting a story. I am grateful Debbie agreed to share a post for my 30 Days of Thanks series. I hope you will take the time to explore her blog or her Facebook page after you read this post.

Starting Over

I’ve had to start over more times than I can count.

As I reflect on those times, although the circumstances were always different, the one constant was that women pulled me from the weeds and helped me through.

Some were already friends, some were mere acquaintances. Sandy Scott was a stranger.

We met at a community center where our preschool-age daughters were taking free dance lessons. We’d slip outside for a break after hearing the same Raffi song for the umpteenth time, and Sandy would excitedly tell me about getting licensed for her home daycare.

I’d been in Seattle for a year, unable to find work, broke, car-less, living with three other adults in order to pay low rent. Back then you snail-mailed resumes and hit the streets to apply for jobs. I could no longer even pay a sitter for a few hours so I could look for work.

I’m not the first woman to find herself in this situation after an abusive marriage—but dang!—freed from one trap only to land in another. One night at dance class, Sandy said, “I’m picking Jess up in the morning, and you are job hunting. I’ll have her back in time for dinner.”

She did this until I landed a job. Then she refused pay for a full month so I could drag a little farther from the weeds.

I’m thankful for all women who lift each other up, and today I’m particularly grateful for Sandy. I think she may have been the first person to say, “Just pay it forward,” and I do, because I remember.

I also remember the grand finale of our girls’ first dance recital. The little ballerinas formed a circle, took each other’s hands, and danced round and round to a song titled “Make New Friends (But Keep the Old).”

Make new friends,

But keep the old,

One is silver,

And the other gold.

A circle’s round

It has no end

That’s how long

I’m gonna be your friend.

 

Thanks for inviting this memory, and for your friendship, Denise.

 

30 Days of Thanks Day 16 – Guest Post by Crystal Thieringer

Photo of a Caucasian woman with short blond hair. She is smiling and wearing a black top with a red sweater, earrings and necklace.Regular readers may recognize my guest today from her prior post here on DeeScribes, Not Liking the Like. Crystal Thieringer, who shares her writing on her blog Muse and Meander, is a dear friend of mine and one of the classiest women I know. Her writing makes me think about ordinary matters in extraordinary ways, and challenges me to be more honest with myself and others. Plus, she’s one of my favorite Skype partners who always makes me feel better after a shared cup of tea via the Internet. I am honored she agreed to share a gratitude post for 30 Days of Thanks, especially considering Canadians celebrated their Thanksgiving last month.

All About Me

I was in high school when I first fancied calling myself a “writer” and to be honest, it didn’t go well. The story I crafted was about a young deaf boy who felt lost and misunderstood until he discovered falconry. I was proud of my tale, and filled with youthful confidence that my name would soon be on the spines of books like those I shelved every day at the library.  I gave my story to one of my librarian colleagues, and asked her to critique it.

She did so, freely and honestly, exactly as I’d requested. I hadn’t anticipated that my writing was horrible. I thought it was a great story, and to realize she didn’t read all the fantastic-ness that I did was devastating. The experience stifled my creative writing for decades.

Though I seldom struggled with papers I had to submit for school, there was one in university concerning the history of medieval instruments that I’d dashed off during an all-nighter. I discussed what these instruments sounded like—and, having never heard them, I had no clue. My research was insufficient, and the professor who read it was not fooled. He failed the paper. He bluntly criticized my lack of comprehension and appreciation for the subject. He thought my similes were ridiculous and suggested I have more respect for readers.

Perhaps others can relate to how I was feeling. There were moments when I said to my bedroom wall, “How dare she!”, to my cat, “How could he!” and to God, “What do I do now?” I self-righteously declared that I didn’t have to listen to them, that my brilliant ideas were clearly above their feeble-mindedness, and that my precious prose was positively perfect. Make no mistake, it was quite dramatically all about me.

It’s easy to laugh at myself now but it certainly wasn’t then.

What I could not see at the time was how much these two people respected me. They saw something in me I couldn’t see in myself. They saw potential for brilliance—if I was willing to work at my craft. Of course their critiques hurt, but only because I was bound by feelings rather than being freed by substance.

Today I’m grateful they invested the time to say more than “it’s good,” especially when it wasn’t. I’m grateful they felt I was worth more than a passing glance, more than a brushing off. Because they were both kind and honest, I learned to critique my own work before I submit it to someone else, and I learned how to be more supportive of other people’s efforts. Because they cared about me in such a tangible way, I grew as a creative and as a thinker. Most importantly, I grew as a person.

Turns out, it really was all about me.

30 Days of Thanks Day 9 – Guest Post by Stella Myers

Today’s guest post comes from Stella Myers, a writer I met in an online writing group. Stella blogs over at Something’s On My Mind, where I hope you’ll go read some of her posts about writing, traveling, and life lessons. Stella has been one of the most encouraging voices in my brief writing career and I am honored to bring you her guest post today – a thank you letter to a one of a kind friend.

Thank you, Floraine

Over fifty years later I can still hear you tell me how to spell your name. You said Loraine with an F. I promptly spelled it Florraine. You kindly said,“ One r, Stell.” Could I help it if my Lorraine used two r’s?

We met when we were new mamas in the hospital room being awakened at 6:00 AM for communion from the hospital priest.

Well, you got communion, I just got closed off with the curtain, because I was one of those passionate Protestants who had sex and got babies, not a good Catholic who was increasing the church! Your words, not mine.

You weren’t excited about washing your face and being ready for the priest and the Holy Meal at 6:00 AM, but you weren’t given a choice and usually by then were visited with breakfast and then babies.

We got acquainted across the room over the heads of our newborns. We deepened our friendship as we walked to the lounge and waved out the window to your two little girls standing on the sidewalk.

We talked of everything. You were worried to stand up the first time after they took out the stitches from your C section. You thought your insides would fall out. They didn’t.

We shared our concern for the roommate (there were four of us) that had given birth to a Down’s Syndrome baby. She was beset with priests, sisters, and family on what to do. You kept up with her for a while, I didn’t.

You taught me compassion and love for others.

Over time, we shared when our babies teethed, yours at six weeks, mine at 18 months. Yeah, mine were slow. You were disappointed that yours had teethed so early. You were looking forward to breast feeding for six months at least, but teeth and breast feeding did not go hand in hand, so he met the bottle.

We shared square dancing, teen-agers, and laughter.

We moved away, but we each learned the other was a letter writer. I loved your letters. Probably one of my favorites was after we had lost most of our belongings in a house fire and I had asked for recipes you had given me earlier. You said that you were sitting at the table typing the recipes and a letter while your mother was reading her paper and probably thinking what a great friend you were writing such a long letter! Little did she know that four pages were recipes!

We began as friendly acquaintances and ended nearly forty years later when God called you home. Though you are home in Heaven, I feel you with me every day.

I miss your humor (my kids thought you were Erma Bombeck in the flesh), your love and your smile. Every. Single. Day.

I will never forget your Christmas light display you were going to put up. It would be a spotlight on your empty gazebo with a sign saying, “ No room in the Inn”.

As I sit here punching the keys to write this I remember how one of your sons tried to convince you that you needed a computer to keep your recipes in because it would be so handy. You told him you had your recipes handy right there: in your recipe box and you could take them out whenever you wanted.

I love you dearly, miss you most sincerely. 

Your friend – Stell

30 Days of Thanks Day 6 – The WEBHER-istas

When I was finally brave enough to tell people I was a writer, I was worried I would be confronted by those who thought I was a fraud. After all, I had not published anything (yet) and had no idea how I would really start to work on “the book.” But I knew if I wanted to learn and become stronger in my creative endeavors, I had to make connections with others who were pursuing similar goals.

I first found friends in the My 500 Words online community. Together, we shared our struggles and successes as we strengthened our daily writing habits. Although I loved having peer support and interactions with other writers, after a year I felt the group was not really pushing me or challenging me to move in a direction I needed if I was going to really get serious about “the book.”

You see, I set a goal for myself at the start of 2016 that this would be the year I start actually writing “the book” – the one I have been talking about writing for four years. I plotted and planned for how I would make time in my daily routine to maintain my blog and produce 3 -5 pages per day.

Then I broke my leg and spent a month in hospitals, and had to adjust to a new way of accomplishing all my daily tasks. I prepared myself to put my writing dreams on hold, rationalizing my need for rehabilitation would need to take priority.

I don’t remember who reached out to me first about WEBHER. It might have been Tonia, but then again it could have been Roslynn. The details of events from late January are still a bit fuzzy because I was not able to write every day and for me, the act of writing down the details helps specifics take root in my permanent memory. The invitation went something like this:

We know you aren’t really focused on writing right now. But when you are ready to write again, we’d like to you to consider joining a Facebook group for women writers.

I read more about the group, a small networking group exclusively for women authors, designed to promote a positive and safe environment in which to read and review each other’s work. It sounded like it was just what I needed, and I began to think I might not have to postpone my writing dreams just yet. I sent back a thank you response with assurances I would be let them know when I was ready to write.

A month later, I realized I missed writing. I was struggling to process all the change in my life and knew I needed to get back to my daily habit of spending time organizing my thoughts into words. I also felt I was ready to become accountable to another group, so I asked if the invitation to WEBHER was still open.

The WEBHER-istas welcomed me with open arms, quickly becoming some of my most encouraging supporters as I progressed through rehabilitation and the return to pre-injury activities. They responded with enthusiasm when I reached milestones. They sent emails and messages asking about my progress. They commented on my blog posts, giving me ideas for future writing.

I have always known peer support was important in helping me develop as a professional, disabled woman. I had hoped to find a peer network of writers in which to grow and further my writing dreams. The WEBHER-istas have become that network. I know when I share my work, I will get honest and constructive feedback. If I have missed a mistake in editing, someone will kindly bring it to my attention – not to make me feel bad for making a mistake, but because they know I would want to fix it. When I share good news posts, they rejoice with me. When I am quiet for an extended time, someone will send me a note asking how things have been.

Thank you to my WEBHER-ista sisters. I admire your talents and your creativity. I appreciate you accepting me into your group and nurturing my writing dreams. Each time I read one of your comments I know I will learn more about you and, just as important, something new about myself. There have been many obstacles this year, but this network has made it possible for me to fulfill a goal. I promise to keep you updated on “the book” – a work I have finally started thanks to your faith and optimism.

My Go-To Tunes: Go Me!

Happy belated anniversary! Oh, you missed it too? Don’t worry. So did I.

Two years ago, on September 7, 2014, I swallowed my fears and hit “publish” for the very first time. I had no idea my little personal writing blog would grow. I thought maybe I’d get 50 followers, with most of them being friends and family. I worried people would laugh at my writing, or question me when I claimed to be a writer.

Well, look at little DeeScribes now! I’ve succeeded at this writing adventure!

  • 268 posts
  • 18,181 views (I love this palindromic number)
  • 9,428 visitors
  • 287 followers

Last year, I was encouraged to set blogging goals and I jokingly responded that I’d have 300 followers by the end of 2016. I never thought I would be this close to reaching the goal by September!

Thank you for sticking with me as I follow my writing dreams. Your words of encouragement, particularly this year, have sustained me when I was ready to crawl in a corner and withdraw. You honor me by taking some of your precious time to read my writing, and I appreciate the gift of your comments and feedback.

To celebrate our anniversary, I’m sharing a very “Dee Song.” Yes, it’s a real thing.  Just ask my friends. Don’t believe me?

Ten years ago, while I was nursing yet another broken heart, my college roommate Chris sent me some music to make me smile. This song, “Supergirl” by Saving Jane, was one of the songs on the CD,  and when I told her I loved it, Chris told me it was a very “Dee Song.” See – I told you so.

“Supergirl” has been my phone ring tone for the past four years. It is a fixture on my Friday afternoon “move it” playlist. I use it whenever I need a reminder that I am flirty, fabulous, and fantastic. I searched for an official video, but the live versions I found were not as easy to understand as the original recorded version. You don’t need to watch the video, just listen to the song.

Happy two years!

This is the colourful banner which reads "Blogging Against Disablism." The square is comprised of smaller squares of different colors. Most squares show stick figures standing. There are two white squares which show a wheelchair and a stick figure with a cane.

Otherwise Healthy

This post is shared as part of Blogging Against Disablism Day 2016. To learn more about this day and read other posts, visit the link.

My friend Lynda wrote a book entitled Otherwise Healthy after her diagnosis of breast cancer. The book is a resource and guide for those facing a health crisis. Although it is geared towards cancer, the chapters can apply to anyone who finds themselves living through chronic illness or disease, endless doctor visits, tests and treatments.

Lynda came up with the title after reading one of her medical reports which said (I’m paraphrasing), “This otherwise healthy woman comes to me after being diagnosed with breast cancer.” When I read this story in the book introduction, it struck me that I have never seen those words written about myself. I have never heard a doctor say I am “otherwise healthy.”

A part of me (the part that understands the medical model of disability which views disability as a deficit which must be cured) can understand why medical professionals do not consider me a healthy woman. I have lived with a progressive neuromuscular disease all of my life. I have used a wheelchair for 100% of my community mobility since 1994. I require the aid of Personal Assistants (PAs) to complete activities of daily living such as bathing, dressing, or using the toilet. Without assistance from my PAs, I would be unable to live independently and would require institutional care.

One of the reasons doctors may not view me as “otherwise healthy” is because I am an outlier when it comes to health and disability. According to the United States Centers for Disease Control and Prevention, disability is associated with health disparities. I took a look at the data for my home state (New York) and found I am not the average when it comes to health and disability. If you consider metrics of health such as blood pressure, cholesterol, weight and lifestyle choices, I am a very healthy woman compared to other disabled adults in New York. My blood pressure and cholesterol are within recommended ranges, unlike the 40 % of disabled adults in New York who report high blood pressure and the 43 % who have high cholesterol. I have lost almost ten pounds this year, bringing me back to a healthy weight, unlike 40% of disabled adults in New York who are obese. For the first time in almost twenty years I am exercising almost every day, something only 13% of my disabled peers claim. I have never smoked, unlike 30% of disabled adults in New York who smoke regularly. While I do enjoy wine I drink alcohol in moderation, unlike 15% of disabled adults in New York who report binge drinking (this is less than the 19% of nondisabled New Yorkers). I do not use any other drugs and do not take any prescription medications. Yes, I am a forty-two year old disabled woman who does not take any prescription medications. Whenever I see new doctors, they are always amazed by this. More importantly, I consider myself to be in good health, unlike 43% of disabled New Yorkers who consider their health to be fair or poor.

So if I consider myself to be in good health, why is it difficult for medical professionals to view me as “otherwise healthy?” I think it is because the doctors, who are still mostly nondisabled men, have difficulty seeing anything but my shiny red wheelchair. They do not view me as a complete person, a common complaint of many of my friends with various disabilities. Doctors see the disability first and think this is the one factor that must influence my health most significantly. They see the disabled woman – weak and contracted muscles, needing assistance, not curable, not fixable – instead of a woman with a full-time job, volunteer obligations and hobbies. Thus, somehow they jump to the conclusion my health must be poor because I have been living with disability my entire life.

When medical professionals wrongly assume I am unhealthy just because I am disabled, they often make other false assumptions about me. I have had doctors and nurses look at me with shock when they discover I have been sexually active. I know some of my family members read my blog and may not want to think about this – but medical professionals should not assume someone is celibate just because they have a disability. Several doctors looked at me askance when I asked about birth control options. Let’s not even talk about the many times I tried to raise the topic of having a tubal ligation, only to have multiple doctors flat out refuse to discuss it as an option.

If doctors viewed their disabled patients as having the potential for good health, the statistics on health and disability might change. If medical professionals looked at their disabled patients as complete people, not just a disease or disability, they would start treating the entire person instead of just the disease or disability. When I was hospitalized due to complications after my gallbladder surgery three years ago, doctors and nurses treated me differently after my sisters encouraged them to stop looking at my wheelchair and start seeing me. I am fortunate to have had advocates to speak on my behalf. I worry about those who do not have such support systems.

One way to help medical professionals view disabled patients as complete people is to introduce the social model of disability in medical training. The social model, which does not view disability as a medical condition or defect in need of a cure, seeks to change society to better meet the needs of the disabled. The social model recognizes my mobility impairment will not go away, does not need to go away for me to be a complete person. Rather, society needs to adapt to accommodate my needs so I can participate fully in my community. I do not know how to incorporate this model into western medical training which is built around helping doctors learn how to “fix patients.” Perhaps I’ll explore that next year for Blogging Against Disablism.

Until then, I hope someday my doctors will view me as “otherwise healthy.” That is how I view myself – and it is how I deserve to be seen.

Writer’s Block? I Don’t Think So!

Writer’s block is often described as a person finding it impossible to think of what to write. I have also heard it described as not knowing how to move forward with writing.

Because I write daily, either professionally in my paid employment, for my own blog, or for my mental health, I do not believe in writer’s block. I do not think it is impossible to think of what to write, or how to move forward with writing.

I know some of you disagree with me. I can hear you now.

But Dee – writer’s block is real! I sit and nothing comes out. I have nothing to say.

Really? You have nothing to say? How did you come up with that argument if you truly have nothing to say? Everyone has thoughts and ideas, even you. The thoughts and ideas popping up in your brain may not be the thoughts and ideas you WANT to write about, but you could still write about them just the same. Are you mad about having to write? Write about that anger! Do you have a pleasant view outside your window? Describe it for your reader. Or do an Internet search related to your topic and find some new fact to spark your brain. Call your best friend and relive a shared memory to help inspire you to write.

Write something. Just write. Look online for daily writing challenges or daily prompts if you need to. Write with intention, with a purpose in mind. And keep writing each day if you want to build a habit or reach a goal like a blog/dissertation/book/insert whatever you want to write here.

OK Dee – I can write about my surroundings or follow a writing prompt. But do you know how busy I am? I don’t have time to write each day.

Forgive me if I make myself sound hoity-toity with what I am about to say. If can find time to write every day, ANYONE can find time. Let me explain before you click away.

Last year I did a time study because I was unhappy with my writing progress. I wanted to investigate how much time I spend each day on writing and how I might still incorporate hobbies I enjoy.

24 hours x 7 days = 168 hours in a week (keep this number in mind)

I manage 49 hours/week of my personal care (this number is temporarily up to 70 hours/week due to my recent injury). This includes time I spend in the shower, preparing and eating food, in the bathroom, etc. I work a minimum of 37.5 hours/week and spend a minimum of 5 hours/week commuting to and from my job. I am in bed for 8 hours/day or 56 hours/week. I will do the math for you: 142.5 hours of each week are accounted for.

This leaves me 25.5 hours of unobligated time – on a good week.  Just a bit more than one complete day. When work obligations require me to work on the weekend or into the evening, I have even less. Yet, I am still able to find time each day to write because I NEED to write. It makes me feel like a whole person. It makes me feel fulfilled. Writing helps me process the world around me, and my place in it.

Plus, I have made writing a daily discipline and I am determined to keep my habit because I don’t know how to fail. It’s a character fault, this stubbornness of mine, and deserves its own post.

I find it helpful to block out time each day for writing. During the week, I write on my lunch break from my paid employment. Other friends get up early and write in the morning before their family requires their attention. You will need to determine what time works best for you. Once you designate that as your writing time, honor that commitment. Block it out in your calendar or appointment book. Diligently protect your writing time so you can maintain your writing discipline.

Join a writing group or find an accountability partner if you need encouragement with your daily habit. I have written before about the wonderful community and support I found at the My 500 Words Facebook group. To learn more about the My 500 Words daily writing challenge and group, click here.

Dee – I’m pretty sure I can find time each day to write about the world around me. But I’m afraid to write because then I’ll have to write about my past/childhood/former relationship/illness/insert scary topic here.

I agree – writing has the potential to be scary. Maybe you don’t really have difficulty coming up with words. You know you can write, but you are worried about facing what I call the “tough stuff.”

The “tough stuff” is the topic in our writing which causes anxiety and dread. I have more than one topic I consider “tough stuff” – my disability and loss of physical independence; and the illness and death of my sister are just two examples. Writing the “tough stuff” requires vulnerability and honesty when I often want to keep it all private from the world.

It is not easy to write the “tough stuff,” but if you want to be authentic, you have to write it. I am more prepared and have the skills to face the “tough stuff” because I practice writing every day. You CAN write the “tough stuff” if you are disciplined and diligent. Here’s one way to do it: use a timer.

The talented and inspiring Marita Golden wrote about this topic in an essay shared on Marion Roach Smith’s blog (Marion’s blog is a fantastic resource for writers but more on that in another post). In her essay, The Power of Ten MinutesMs. Golden explains how she used a timer to help conquer her fear of writing about difficult topics – race, prejudice, the color complex – and find her authentic voice. The line I found particularly encouraging has stuck with me since I read the essay.

The timer was set for ten minutes because I knew no matter how virulent the terror, I could write for ten minutes. – Marita Golden

Can you endure writing the “tough stuff” for ten minutes? Set a timer for ten minutes and you will see just how quickly those ten minutes fly. And isn’t it easier to face the struggle of something difficult knowing there is an end point? You aren’t writing  your “tough stuff” for the entire morning/hour/lunch break/evening/insert your designated writing time here. It’s only for ten minutes.

I was so inspired by this idea of just ten minutes that I tried it last week. I moved my penguin kitchen timer from the oven to my computer desk, turned the dial to “10” and started typing. The DING! startled me and I realized I wasn’t ready to to stop. I was on a roll! I kept writing for another hour. Will I keep all those words? Probably not. But I finally tackled something which I had been avoiding because I gave myself permission to stop after ten minutes. I can face almost anything for ten minutes.

I was so inspired, I set the timer for 10 minutes when I had to start exercising with a more challenging exercise band. This technique works beyond writing!

Writer’s block isn’t real. It is an excuse used by undisciplined writers who are scared of writing the “tough stuff.” Daily dedication and diligence are required, whether or not you earn income from your writing. If you are writing with intention on a daily basis, even for just ten minutes, you CAN find the words and be successful.

 

What do you think? Do you believe in writer’s block? How do you beat it? Share your tips in the comments!