Over the past 10 years of blogging and meeting with others with low vision, there is one topic that comes up again and again. It comes up most often around holidays or social gatherings but sometimes at the workplace. It comes in the form of many different questions, stories and laments, usually surrounding not feeling helpful or useful, but it basically boils down to one word: worth.
I was discussing this with my uncle Kevin recently, and he wisely pointed out that the feelings of unworthiness are experienced by all humans, not just those with vision loss or disabilities.
We’ve addressed this topic peripherally, such as in holiday posts like “Blind Survival Skills in a Bustling Holiday Kitchen”, but after a recent evening at a friend’s house, I came face to face with it yet again.
“We are total badass mountain women!” I called to my aunt Beth as she turned to watch me triumphantly lift one clunky snow shoe over a thick log blocking the trail, my second foot coming in for a shaky landing beside it. We both laughed, knowing we probably looked nothing like badasses trudging our way through tattered trails layered up in winter gear like mummies. But sometimes internal feelings are more important than the external reality.
If you’ve never been snow shoeing, picture wearing giant flippers over your boots, only the flipper parts aren’t floppy or malleable and are located in reverse, trailing behind your boots like slight paperweights with deep grooves that dig into the snow to keep you from sliding. It amounts to quite the workout, as you must lift your giant, backwards clown feet up high in order to avoid the snow shoe attaching to random branches, and when walking slim paths in which one foot is placed narrowly in front of the next, a snow shoer must take extra care not to step on the back of their own snow shoe, thus tripping oneself. And yes, I know these details from several failed attempts at badassery.
I’m hot. My face. My throat. My chest. The heat seems to be traveling down my body. Or maybe up? It’s hard to source because the heat is consuming me. Everyone is waiting. I feel their eyes through the computer screen. They are waiting for me to click a button. And I can’t find the button. My mind knows exactly where to click, and it should take two seconds. But my eyes aren’t cooperating. It’s taking two minutes and counting. It feels like two hours.
“Joy, if you go to Participants, all you have to do is click on the arrow next to the ‘More’ button, and arrow down to ‘Make Host.” Then, I’ll be able to share my screen,” my Regional Coordinator says as if I’ve new, as if I don’t run virtual meetings regularly five days a week.
“Yep, I’m working on it,” I say like responding to someone who asked me to take two simple steps toward them as I stand still, staring at them.
“You can also just right click on the box where my face is.” My RC sounds stressed, probably regretting making me begin the meeting, so that I could lead us in a relaxing mindfulness exercise. I thought she was going to make me “Co-host”, but for whatever reason, she clicked on “Make Host,” and now the only way to continue with the dozens of slides she needs to share within a tight timeframe is for me to click a button.
My RC is unaware that what can be a simple walk to the corner, to me sometimes feels like a hike up Mount Fuji. I manage to drag my giant mouse icon to the “More” button arrow, and I arrow down to “Make Host.” I sense relief. Then as I move slightly off-course, the drop-down options disappear. I nearly reached the mountaintop and it feels as if someone has whisked me back to the base.
I’m finally on summer break, after a long school year during an even longer year, and I return to writing as one returns to an old, neglected friendship. A little timid and sheepish with guilt over the time spent away mingled with the eagerness that only hope and steadfast trust can produce.
I’m playing hooky from the virtual yoga teacher training Jenelle and I are taking together to spend a little time with doublevisionblog this morning because I feel like I have things to say. My thoughts and words feel like they are awakening from a COVID coma, as I strain hard to strengthen their atrophied state, stretching and breathing through the discomfort.
But I’m not alone. My physical therapists come in the form of books, other writer’s stories reminding me of my own, and I read them with the voraciousness of someone who hasn’t eaten in many months. Yes, I’ve read books over the past year for book club and lots of words for work, but there’s something other-worldly that occurs when you get fully lost in a book, and time itself bends , unaware whether 8 or 18 hours have passed as the words pour over you in waves of recognition. In the first 2 weeks of my summer break, my family and I have travelled to 4 states, and I’ve finished 4 books, one for each state, each one aiding in the recovery of a different part of myself.
This memoir is a NYT bestseller written by a disability advocate living with paralysis. The book was actually recommended by a good friend from the “Daring Sisters” retreats Jenelle and I have attended and is written by her cousin, Rebecca Taussig. It is a collection of essays about her experiences growing up with a disability and the complications of kindness and charity, intimacy and ableism. If these sound like heavy, somewhat-depressing topics that aren’t exactly light summer reading, that is half true. As I read Rebecca’s words, I grappled alongside her over the complexities of living in a body “that has been sent to the margins”, as she writes in her dedication. And yet her coming-of-age stories with references to 80s and 90s teen girl icons like Christy Turlington and teen magazines weave in a lightness that had me nodding, smiling and chuckling to myself at times.
For much of the summer, my family and I have been without a dwelling. This is not to say we haven’t had homes. We have made a home wherever we have landed, and each place has taught us something. In fact, my singer/songwriter husband, Ben Thomas, even wrote a song depicting the essence and lesson of each place, from the RV campsite on Morro Bay to the sheltering trees of Yosemite to the resort-style campsite at Mt. Shasta to the windy Oregon coast to the 2nd floor of my parent’s home in the Cascade mountains.
Visual description: Joy with Yellow Lab guide dog, and two daughters, walking along trail in Yosemite National Park with El Capitan looming in the distance.
The 4 of us humans, 5 beating hearts including Roja, are a tight-knit little unit that has bonded together over the past 4 years as we navigated new territory in SoCal after leaving our established lives in the Midwest. I like to think that offers us some security as we try to ground ourselves during these very uncertain times, both in our personal lives and the world.
I’ve been thinking a lot about the word “dwell”, both in terms of the first definition usually listed, “live in or at a specified place” and also of the 2nd definition “to think, speak or write at length about a particular subject, especially one that is a source of unhappiness, anxiety or dissatisfaction”.
I have somehow mastered the incarnation of the latter definition, as I descend from a long line of ruminators, dating at least as far back as my beloved grandpa Bob. But probably much further. Based on the lamentations of poets and storytellers over the past couple thousand years, rumination is more of a human condition than a genetic defect or anomaly. Some of us just practice it more than others.
As a person living with RP, the opportunities to practice dwelling present themselves quite often.
The most head-spinning practice opportunities seem to arrive right when I’m most relaxed, when my guard is down and I’m least expecting it. One such encounter occurred a couple weeks ago as my husband, Ben and I celebrated our anniversary.
Visual description: Joy and Ben looking over the Icicle Creek River at Sleeping Lady Resort in Washington State.
Thanks to a gift from my 3 generous sisters, we were sitting on the outdoor deck at an upscale restaurant, getting served plate after plate of mouth-watering gourmet food. Besides the occasional joking and chatting with our bubbly server who I imagined smiling underneath her mask, we were surrounded only by the sounds of the nearby rushing river and the gentle rustling of trees kissing in the breeze (okay, and also intermittent slurping sounds from the lone woman sitting at a table 6 ft. from ours. Very strange and distracting.)
Amid this (mostly) quiet setting, Ben and I were relaxing like 2 newlyweds without a care in the world. And considering there are so very many cares in this world right now, it felt a bit like hitting “pause” for an hour or so. Bubbly server came with our next course— soup and salad. I picked up my glass of water to take a sip, and was careful to set my glass down gently, in the same place it had been. What I didn’t see was that the server had set my bowl of corn bisque basil soup in the exact place where my water glass had just been, so I had set my entire glass of water in the middle of my soup.
As a followup to last week’s post on “The Power of ‘I Don’t Know’“, my very talented husband created this Mantrasong that I think Doublevisionblog readers will find meaningful.
Ben’s been creating and posting these videos weekly, so be sure to subscribe to his new YouTube channel and check out the rest of his music.
LYRICS — It’s okay to not know It’s okay to let go It’s okay to un-know It’s okay, the unknown
When I first began accepting my blindness just a few short years ago, it unleashed a well of knowing from somewhere deep in my being. So many unknown aspects of myself as a human became clear. So many of my perceived flaws simply became things I needed to learn. And I dove into the learning. Into the knowing. I learned braille (elementary as it may be at level 1). Mobility training. Accessible technology. And those were just the physical aspects. I learned so much about myself emotionally, mentally, spiritually. And I loved writing about it all, as everything just flowed so easily out of me. I felt so proud to share what I knew because I had spent so many years feeling like I had nothing to offer. I spent so many years feeling the burden of “I don’t know”. Continue reading “The Power of “I Don’t Know””→
Parenting Without Pity is a storytelling project and podcast series where disabled parents draw from our own experience of disability as children to help non-disabled parents be better allies for their disabled children.
We are honored to be part of this project. Listen to our episode here about our experiences growing up with low vision. Then, when you are finished check out the growing catalog of stories they have published!
(Note: Fans of the movie, “Inside Out”, I have a fun little story for you today! As you may know, the movie is based on “Internal Family Systems” a therapy model that invites you to go inward and explore how all the different parts of you are thinking and feeling. The movie depicted the parts as “emotions” like joy, anger, sadness and disgust, which is often how parts show up. In this short recap of my morning, I note the differences in how parts of me are feeling about the same situation.)
Joy, 9-year-old daughter and guided dog walk uphill toward school.
“Shall I bring my chai tea with me?” I pondered this morning (because one always uses words like ‘shall’ and ‘ponder’ at 7:15am while trying to get out the door to walk your 3rd grader to school). Anyone who uses a cane or guide dog understands the need for just ONE more hand to carry objects or hold the hand of your child since one hand is always grasping the handle of a cane or harness. But alas, there were no extra hands to be found, as my husband left early this morning and my daughter needed to pull her wheeled backpack on our 20 minute uphill route to school. Plus, I reminded myself, my daughter would not be with me on the way back down the hill after dropping her off at her classroom, so I really couldn’t ask her to carry anything extra.
It was the warm, smooth feel of the piping hot travel mug on a cool California morning that made the final decision. The mug of sweet, spicy chai with a slight boost of caffeine was coming with me. Sure, I would have no extra hand to leash cue my guide dog, check my phone (which lay snugly in my small crossover coin purse draped over my shoulders), nor press the traffic light button. And it would take some fancy handy-work to reach into my sweatshirt pocket for kibble to treat my guided dog, Roja, at corners. But having that steaming cup of tea on this gray morning would be worth it.
My 9-year-old, who transforms into a chatterbox of theories on everything from how french fries probably got their name to whether life on other planets exists, and I strolled casually up the hill, talking away. Until we were about 2 blocks from the school and realized we only had 5 minutes to make it the rest of the way. So we paused the philosophizing and started walking at a brisk pace.
After hugging her goodbye with 30 seconds to spare, Roja and I began the trek back home, and it was only then that I realized I hadn’t even taken a sip of my chai tea yet. Not wanting to waste my efforts, I decided I better make carrying it worth it and take a sip. Apparently it must be a very insulated travel mug, as the tea was still hot enough to burn my lip. I left the lid slightly open as I walked to help cool it down, splashing little bits of chai on myself as I walked. After several minutes, it was cool enough to sip (hooray!) It had also steeped for 25 minutes and was extremely strong. So I halted Roja again and took the tea bag out.
But what to do with the dripping wet tea bag? The lazy part of me was tempted to just toss it in the grass to the side of the walkway, but the conscientious part of me didn’t want to litter (plus, there were a million cars driving in and out of the school car line who could easily see me tossing trash to the side and pass judgment). Since I still didn’t have a 3rd hand to carry anything else with, I strategically maneuvered my fingers to grasp both the mug and the dripping tea bag at once. I was sure there would be a garbage can somewhere on the route home.
With mug, tea bag and harness handle in hands, Roja and I continued our walk down the hill. Until several steps later when Roja made it clear she needed to relieve. I carefully set down the mug and tea bag, lifted her harness off her and took her to the grassy area next to the sidewalk. Roja did her business and, after sniffing around for a couple minutes, was ready to work again. I picked up the tea bag, mug, harness handle and leash and headed for the stoplight, where I managed to drop the handle and hold the leash with my arm while pressing the walk signal. As we waited for the light to change, I felt my purse vibrating and realized I was getting a call. I knew I could ignore it but the anxious part of me that remembered how an ambulance came to the school just yesterday due to a playground injury didn’t want to miss the call. Again, I held the leash with my arm, fumbled to give Roja a quick treat for stopping at the corner, unzipped my little crossover purse and answered my phone. It was an ad. I quickly stuffed it back in, realizing it was time to cross the street, picked up the handle and gave Roja the forward command. Having walked this route many times, I knew there were garbage cans near the shops I was nearing but couldn’t remember exactly where.
“Roja, find garbage,” I said, not quite sure if we were that close to one. Apparently we were not, as she just kept walking. Then I remembered the garbage at the corner near the pool. “Roja right”
Finally, the garbage can was just steps away, and I could responsibly throw away my chai tea bag without littering. I dropped the leash handle for a moment and grabbed the long string dangling from the soggy mass. Only it slipped through my fingers on to the ground. For anyone with 180 degrees of vision, this little drop would be no big deal. You would simply glance down, pick up the tea bag, toss it in the can and be on your way. But for anyone with sight loss, you understand the utter frustration of kneeling down and feeling all around for something you JUST had, only to find it has vanished from existence. Seriously? Did I just walk 20 minutes downhill grasping this dripping thing so that I could properly dispose of it, only to drop it on a cement sidewalk where one of our many neighborhood dogs could come upon it and get ill from ingesting it. The irritated, impatient part of me just wanted to forget about it and walk home. Dogs eat weird crap all the time. Would a chai tea bag really be so bad?
But that annoying, responsible part of me who speaks up at the very worst times required me to keep kneeling, sweeping my hand all around me in search of the tea bag. I shifted my weight slightly to readjust and pick Roja’s leash back up, as she had started to wander and felt something under my foot. Could it be? Could this search finally be over so I could return home and get to work?
I was never so happy to feel a cold, damp clump in my hands!
I tossed it in the garbage, picked up the handle and walked home. As I walked in my front door, the same place where only about an hour earlier I had made the split second decision to bring my mug of tea with me, I took my 3rd sip of tea. “Totally worth it,” the grateful part of me thought. All other parts remained silent.
I think back to my first school principal 15 years ago, who was extremely kind, and how he probably would have been more than happy to assist me with any accommodations I needed. But I was afraid to ask and too proud to admit when I struggled, which really took a toll on my happiness and even health.
I remember a particularly devastating moment during my first year of teaching. We were doing “student-led” conferences where the 7th grade teachers floated from table to table to meet with students and parents to discuss student progress. I kept waiting for one of my more challenging students to arrive with his parents so that we could discuss some behavioral issues. I never saw the student nor his parents, so I just kept floating from table to table and assumed the family was a no-show. At the end of the evening, our school’s dean said he’d like to talk with me. He told me that RJ and his parents had come to his office to voice a complaint that I had purposely ignored them and walked past the table they were sitting at during the conferences. I was stunned and awkwardly explained to the dean that I hadn’t seen them, which I knew sounded crazy. How could an entire table of people be outside of my line of vision? I asked him why they hadn’t just come up to me, and he said that he even offered to walk them back in to find me but they were too upset. I remember sitting alone in my classroom after the dean left, hot tears of shame and anger slowly trickling down my face as I recounted the evening, wondering if I had unknowingly skipped over any other students due to my lack of sight. I hated that my actions (or lack thereof) were so misunderstood. I later called the parents to apologize, but they seemed to have already pegged me as uncaring and incompetent by that point.
It took me a long time to even tell my team of teachers what had happened, but once I did they made a habit of whispering which students and parents were waiting at tables. But I still dreaded those evenings. Thinking of them now, I wish I had thought to simply ask if I could be seated at a table, or even in my classroom, and have the families come to me instead. Yes, that would have required our team and school to adjust how we were running conferences, but it’s a very reasonable accommodation that would have prevented both misunderstandings and stress.
Today, I am able to ask for what I need more easily. For example, I was struggling with some of our forms, particularly the handwritten ones since my screen-reader does not read handwriting, so I asked my director if one of the admins on our teams could read them to me. She was happy to help and even offered that they type the top portions of my forms.
This isn’t to say I’ve completely figured out how to handle vision loss in the workplace. Far from it. New challenges continue to arise, and I have to figure out how to navigate them.
After my first couple weeks of implementing 504 Plans, for example, I received an e-mail listing some errors in several plans I had finalized and sent to our filing clerk. This might not sound like a very big deal, but these were documents that had already been signed by staff and parents and filed in cumulative student records. In order to correct them, I had to re-upload documents, obtain new signatures and have clerks reprint and refile documents. My oversights cost other employees extra time and effort, which is not even close to the quality work I desire to do. And it sent me immediately into a shame spiral. Fortunately, thanks to Brene Brown and my “Daring Sisters,” I now have some shame-resiliency tools to help me work through blind shame, something I didn’t have in my 20s. Vulnerability is one of these tools, so I was able to share my struggles with a close friend who also has vision loss. She put words to my feelings, saying that my performance didn’t feel consistent with how I would want to perform if I had full sight. I also opened up to a co-worker, who not only offered to start peer-editing my 504 plans but also took the time to empathize and said, “You’re an asset to this team. You bring something that some of us don’t have.” I smiled when she said this because I immediately thought back to the first time I received an e-mail from a teacher and parent of a student with a visual impairment. I couldn’t wait to help a student in an area where I have firsthand experience. But I’ve noticed that it’s not just students with vision loss that I feel grateful to assist. I feel rewarded every time I put an accommodation in place that I know will help a student engage with learning in a way that fosters confidence, regardless of their disability.
My director is working with me to find less cumbersome ways to do my job, including having someone proof my forms for typos. It’s not that I’m not able to spot typos, but I’m not able to “spot check” a document or quickly scan over it like most people can. My screen reader is picky about what types of documents it will read, and it doesn’t always read everything that’s on the screen. Staring at pages and pages of typed documents with intermittent gray boxes causes me a lot of eye fatigue and headaches, so we’re working on ways to streamline the process.
The irony of trying to figure out my own accommodations in order to put accommodations into place for students is not lost on me. I think back to my years as a student and remember teachers telling my parents that I needed to speak up and ask for help, which always confused me because I often didn’t know what I needed.
Now, after years in the classroom, both as a student and a teacher, I’m finding my stride. I’m learning to celebrate the new tasks I have mastered – as small as they might seem at times. I am learning not to compare myself to my co-workers, as they seem to master new things more quickly and with more ease. I’m struggling at times, but I’m not allowing my struggles to shame me.
Photo description: water-style script type font with Brene Brown quote mentioned.
A friend sent me a framed Brene Brown quote for my birthday that says, “I will not shrink back. I will not puff up. I will stand my sacred ground.” It now hangs over my work desk so that I can glance up at it as a reminder before my meetings. I visualize the name of the student and their needs, and pray for guidance on how to best help them.
I know I may not immediately have all the answers for them, but I at least want to start at a place of empathy and understanding. I’m learning that the more practice I have at standing my own “sacred ground,” the more capable I am of encouraging others to do the same.
