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.
We recently had the pleasure of sitting down with Marc and Ricky from Hadley for a conversation about our ongoing journeys adjusting to vision loss. We share experiences from as far back as our original diagnosis all the way to the present as we dive into some of our favorite topics surrounding emotional healing and disability.
If you haven’t checked out Hadley’s podcast before, it’s full of engaging discussion and tips. We’ve also recently discovered Hadley’s resources and courses. Stay tuned for future posts on courses we’ve found helpful. Feel free to comment on anything we discussed below, or email us at mail@doublevisionblog.com.
As Joy and I collaborated about blog post ideas for 2022, I came across a meaningful story from one of our favorite authors, Elizabeth Gilbert. I noticed a physical shift within my body as the story unfolded, a release of tension and a renewed sense of hope. It was exactly what I needed at the start to another year filled with uncertainties. Sharing this story with our readers in hopes that 2022 brings fresh opportunity to illuminate your world.
“Some years ago, I was stuck on a crosstown bus in New York City during rush hour. Traffic was barely moving. The bus was filled with cold, tired people who were deeply irritated with one another, with the world itself. Two men barked at each other about a shove that might or might not have been intentional. A pregnant woman got on, and nobody offered her a seat. Rage was in the air; no mercy would be found here.
But as the bus approached Seventh Avenue, the driver got on the intercom.”Folks,” he said, “I know you have had a rough day and you are frustrated. I can’t do anything about the weather or traffic, but here is what I can do. As each one of you gets off the bus, I will reach out my hand to you. As you walk by, drop your troubles into the palm of my hand, okay? Don’t take your problems home to your families tonight, just leave them with me. My route goes right by the Hudson River, and when I drive by there later, I will open the window and throw your troubles in the water.” It was as if a spell had lifted. Everyone burst out laughing. Faces gleamed with surprised delight. People who had been pretending for the past hour not to notice each other’s existence were suddenly grinning at each other like, is this guy serious? Oh, he was serious.
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.
A familiar sensation of tightness gripped my throat as my heart pounded in my chest and the knots in my solar-plexus twisted into familiar shapes. I sheepishly gazed downward, tears streaming down my face, mumbling to Paloma, “I should have this figured out by now. Helping people improve their mental health is what I do for a living. Why does this keep coming up for me?” Paloma’s tone was soft with compassion as she gently reminded me that my experiences of living in a body that does not fit society’s standards of “normal” are not just in the past, they continue each day.
I trusted her words, knowing that she is an experienced therapist with a multitude of academic training; possessing a deep understanding of what it means to heal from identity-related grief and trauma. I understood all of this on a cognitive level, but my body felt flooded with shame at having this sudden temporary upsurge of grief (STUG). The term “STUG” was coined by Dr. Therese Rando over 3 decades ago to describe intense, unexpected surges in emotions for those who have experienced past grief or loss. While Dr. Rando used this term in the framework of loss of a loved one, I am taking the liberty of applying it to my grief related to identity/disability. Continue reading “When Will I Get Over This?”→
It’s been quite awhile since we’ve added a new blog post. It’s definitely been on our minds as the days pass quickly with family, work, school, and travel. We remain passionate about sharing our journeys, and providing education, advocacy, and stories about blindness to our readers.
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.
In keeping with a blog-length telling of this story I’ll skip the details of the obvious acceptance of the position, the additional HR paperwork and even my first work trip to Northern California (though that most surely will end up as a future post, as several noteworthy challenges presented themselves on the trip, including my Uber getting pulled over on account of me, a pleading conversation with a police officer and some guide dog conundrums)
I was, of course, excited by the flexibility of the new position and how many of the meetings would be done virtually. What I hadn’t accounted for, however, were the many pieces of technology I would need to familiarize myself with in order to conduct these meetings.
When I shadowed my first meeting and saw the experienced support coordinator sharing her computer screen and clicking from resource to resource using her mouse, seamlessly demonstrating extremely visual techniques and interventions, my first thought was “how will I EVER be able to confidently lead an interactive meeting like this?” I doubted my ability to even log in correctly, much less share the proper materials with parents. And my nerves turned to cold sweats when I held a practice meeting with one of my co-workers and mistakenly clicked on my text messages after hitting “share screen,” promptly lighting up my shared screen with all of my personal text messages.
“Um, maybe you don’t have to share your screen during meetings,” she offered. I could tell she was nervous for me.
“Ugh”, I laughed, mortified, “I’ll keep working on it before I do an actual meeting.” And I did. I practiced with my assistive tech trainer. I practiced with my husband. I practiced with imaginary meeting attendants. I came up with techniques to ensure nothing else even appear except the exact document I needed to share, closing every single item on my computer prior to practice meetings (which, if looking at my desktop on any given day, is A LOT of windows!).
Nonetheless, nervous adrenaline pulsed through my entire body as I logged into my first virtual 504 meeting.
The aspect I was most nervous about was how large I had to blow up the accommodations in order to see them well enough to read aloud because it meant that the parent would also have to read a super enlarged version that caused parts of the plan to disappear off the screen. I was also nervous I wouldn’t be able to find it on the desktop or that I would read it in a stammering way, as my fields of vision are so narrow that I really only see one word— and sometimes even one letter— at a time. I went over and over the accommodations in my mind beforehand so that I could paraphrase some of them and not have to read word for word. And when it came time to share my screen, I took my time even though I felt self-conscious about making everyone in the meeting wait in awkward silence as I focused on choosing the correct document. I zoomed in as much as possible, just to glance over a couple of the words, and then paraphrased each accommodation as the parent read along.
I have been leading these meetings for the past month, and I have moments where I think “holy cow, I’m doing it!” I’m sharing my screen, moving seamlessly through Google Docs, and using technology in ways that felt impossible a couple months ago.
And I’m allowing myself to celebrate those moments of success, something I really didn’t take the time to do in my early working years. I honestly don’t think I was even aware of the beautiful ways I developed to compensate for vision loss in the workplace in my 20s. I felt ashamed of doing things differently, of using non-visual techniques and of admitting that I needed accommodations. I didn’t like to admit that most tasks take me longer. It sometimes feels embarrassing to celebrate acquiring new skills that seem very simple to others. But I think it’s absolutely essential to acknowledge small victories, as they bring awareness to growth. When we don’t recognize growth, we can begin to feel like we are forever striving but never really getting anywhere because there is so much to learn.
The white cane continues to be a sign of independence for the blind community. White canes also continue to baffle the public. That’s why October 15th, White Cane Awareness Day, is an important day to dispel myths and provide information on what the white cane is all about.
White Cane FAQs
Q: If someone has a white cane, does it mean they need help?
A: People with vision loss use white canes to navigate independently. A person using a white cane is less likely to need assistance because the white cane is used to locate and avoid obstacles. It is best not to assume that someone needs help, but rather offer assistance if you feel inclined and be respectful if they do not want assistance.
Q: That person is using a white cane, and now they are reading a book. Does this mean they are pretending to be blind?
A: Vision loss comes in many different forms, requiring different adaptations. Some people who use white canes have peripheral vision loss which makes navigating safely without a white cane challenging, but maintain central vision which allows them to see print and recognize faces and objects using their central vision.
Q: Why are the white canes so long?
A: The length of the cane is important because it signals to the user what is happening several steps ahead of them. If the cane is too short, the user will not have enough warning that a curb or staircase is ahead.
Please let us know if you have more questions or comments about white canes!
Photo Description: Picture shows a person’s legs walking with a white cane navigating ahead.
