It’s been almost a full year since our last blog post. When the annual renewal fee arrived recently from WordPress, Joy and I discussed whether or not to pay the fee to keep our blog going. We wondered if this blog is still relevant, both for others and ourselves.
And then last week we received a short email that read. “Your blog has been a lifesaver for me as a Mom of a little one struggling with different vision issues. Please keep blogging if you have the chance”
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.
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.
When the topic of vision loss in the workplace comes up, a discussion about suitable careers for people with vision loss typically ensues. These career options can sometimes feel limiting because we live in a very vision-centered society. Reflecting back on my past employment experiences, I have definitely not chosen visually easy ones.
This is not at all to pat myself on the back in the bravery department, as I honestly didn’t really think the visual challenges through until I was thick in the midst of them. I simply followed my interests, which is how I ended up as a foster care case manager at age 22, a position that required more driving than most UPS delivery employees. For a person without a driver’s license, that’s a bit of an issue, especially since it was before the days of Uber in a suburban setting where “mass transit” involved a fleet of soccer moms in mini vans. The position also involved transporting minors that were wards of the state, so I couldn’t exactly pick them up in taxicabs, though the cab fares probably wouldn’t have covered my social service salary anyhow. I had to get creative and ended up on trains (for the occasional urban trips), planes (for court-ordered, out-of-state sibling visits), and automobiles of individuals willing to be fingerprinted, including my generous husband!
Photo description: Joy sitting on a chair, speaking to a group of children around her on the floor in a classroom.
Eventually, my interests and sanity needs led me to the classroom, which eliminated the transportation dilemmas but of course presented challenges of its own; as there are no training handbooks for managing a classroom of hormone-hyper 7th graders using non-visual techniques in an educational setting accustomed to visual methods such as hand raising. For someone with 4 degrees of peripheral vision, spotting a raised hand in a packed classroom is a bit like playing Yahtzee: there is a touch of skill involved but mostly a whole lot of luck. Of course, I created alternative management methods, such as assigning a class “caller” or giving students noisemakers in lieu of silent hands (in hindsight, not my brightest idea, but teachers in their 20s have to learn the hard way sometimes).
Fast forward to this past spring, when I was checking my e-mail before going to bed (a habit I’m trying to break) and saw a message that made me sit straight up in bed and elbow my husband. “Oh my gosh, babe, listen to this new internal job posting!” It was for a “student support coordinator” at the charter school where I was working part time. The position said it involved meeting with parents and teachers of struggling students in order to recommend interventions. But the part that most drew me to the position was that it involved creating 504 plan accommodations for students with various disabilities.
“Wow,” my husband elbowed me back, “that sounds perfect for you. You’ve been dealing with accommodations your whole life.” He was right, and as a general education classroom teacher, I always felt a certain connection to the students who had extra challenges, though I never wanted to be a special education teacher. I’ve always identified more with students who are completely capable of doing grade-level work when given the right accommodation because it’s so similar to my own story. I can perform just as well as any classmate or co-worker when accommodations are in place.
I began drafting a cover letter that very night (hence, the reason you should never check e-mails before bed unless you plan on staying up until midnight). I notified my current director, who wrote a recommendation letter, and started prepping for the interview.
Since the school is one of the largest charter schools in California with offices in various cities, and the Director for the Support Team was in Northern California, the interview was set up as a virtual video meeting in the videoconferencing app Zoom. I had to log into it in order to meet with a team of interviewers. The virtual interview setting brought some relief, as I didn’t have to worry about finding which chair to sit in, which person to look at or whether to bring my guide dog or cane, but some challenges arose for me as soon as the interview began. My internet signal was acting up, so my voice was cutting in and out. The director suggested I call in while still keeping my screen on in order to see the documents they were sharing. My heart immediately began to race as I attempted to dial in while everyone waited. Fortunately, I had done a “practice” Zoom session with my assistive tech guy, and he had shown me how the one-tap iPhone number automatically entered the access code for me, so I didn’t have to worry about fumbling with entering a code. Simultaneously, my mind raced over whether I’d be able to see the documents they were sharing with me. I had mentioned my visual impairment in my cover letter, but wasn’t sure who had read the it and couldn’t find my words to bring it into the conversation. (Looking back, the shared screen documents seem like an obvious segue.)
Even though I’ve written posts and published articles on the benefits of hiring people with disabilities, old stories of inadequacy and blind shame surface at the most inconvenient times.
The team gave me several scenarios, which they both read aloud and put up on the screen I tried zooming my screen in but still could not read the scenarios very well, so I tried to just focus on their words even though my brain felt engulfed with fog. I took very long pauses and admitted that I didn’t even know what tier 1 and 2 interventions were! The only question I felt completely confident and articulate answering was the difference between modifications and accommodations.
My stomach muscles knotted up as I realized I was majorly stammering through my answers, talking in circles. Was I making any sense at all?
I felt relief when the interview ended but immense disappointment over how it had gone.
So I was completely shocked the next morning when I received an e-mail from the director, saying she’d like to talk about the position in more detail. It turns out that the interview team liked that I had some background in social work in addition to education. This is a very involved position,” she said, “it’s full time, and there’s a lot to it.” She suggested I take the weekend to think about it and consider the impact on my current obligations.
Had I just been offered the job?!
I mulled it over for about 5 seconds before deciding it was for me. I didn’t overthink the visual challenges that surely were ahead.
