We had the pleasure of joining our friend Adam Mock on his inspiring podcast, “Rescue Your Dreams”. Here’s what he had to say about our conversation. Give it a listen below and be sure to follow “Rescue Your Dreams”! – J & J
Navigating Suffering Through Compassion with Joy Thomas and Jenelle Landgraf
Visual Description: Podcast image of Adam Mock with Joy and Jenelle
In this episode, my guests Joy Thomas and Jenelle Landgraf take us on a journey of navigating life’s challenges by embracing compassion and accepting the messiness of circumstances we didn’t choose.
Joy and Jenelle are identical twin sisters, writers, and co-creators of the Double Vision Blog, where they share their experiences living with retinitis pigmentosa (RP), a degenerative eye disease. Although they face the same struggles with vision loss, their perspectives on life and how they manage their challenges differ, offering unique insights to their readers.
Through their writing, Joy and Jenelle aim to show that there’s no one “right” way to go through suffering. They believe that by sharing their personal stories and focusing on compassion, they can help others find strength in difficult times and navigate their own hardships with grace and understanding.
Their mission is to encourage readers to embrace the imperfections of life, using compassion as a guide, and to foster deeper connections through shared experiences.
Photo Description: A sweet moment between Lucy and her mom, Joy, on Lucy’s first day of first grade. Lucy, with her curly blonde hair and a gentle smile, wears a purple dress with white stars and a checkered backpack. Joy, smiling brightly beside her, leans in close, her blonde hair pulled back. In the background, a school setting, filled with excitement and new beginnings.
Grief comes in all shapes and sizes, and for all sorts of reasons. It is, at its most basic level, our response to loss. At the heart of loss is change. I once heard someone say that we as humans equally crave and fear change. I experienced this in 2006 upon the arrival of our firstborn, Lucy Joy.
I was, like most first-time moms, completely overjoyed and completely overwhelmed. I was also surprised by something no one had warned me about and a bit worried I was alone in feeling it. I missed having my baby safely in my belly. The outside world suddenly felt so big, and she was so small. The human realm felt a bit unsafe, like it could blink her 7 lb 6 oz frame out of existence in an unaware twitch of its monstrous eye.
While I loved the feeling of being pregnant, by the 9th month my body was, of course, relieved not to be lugging another human around in my abdomen, but my mind and heart had some catching up to do.
As a writer, I liken it to the process of a tiny seed of an idea transitioning into a published piece. What was once part of your inner world is out there, open for the world to read and enjoy but also to critique.
Author Elizabeth Stone put it well when she wrote, “Making the decision to have a child — it is momentous. It is to decide forever to have your heart go walking around outside your body.”
Both conventional wisdom and science support the idea that changing hormones are a major contributor to the “baby blues” and postpartum depression, but upon reflection, I wonder if the grief of such a major change, despite being a joyous change, is a larger factor than we often acknowledge.
As I move through another major change, sending Lucy off to college, familiar feelings from 18 years ago resurface. My little seed of an idea has sprouted from a small published piece into a fully developed novel and is now being adapted into a screenplay.
It’s a writer’s wildest dream, and yet many people forget how screenplays are typically written by a different writer. It’s still your story, and yet it’s not your story.
As an artist, at some level, you realize it was never really “yours.” Your muse always intended for you to share it. As a parent, it’s precisely the vulnerability of sharing your child with the world that leaves you wondering whether your child is prepared to transition into adult life. If you’re lucky, you catch glimpses of readiness as their departure from home draws nearer. I caught one of those glimpses on a hard day recently.
I was home alone following a vision-related incident that left me in a moment of incredible grief and shame. It had been quite a long time since I’d felt any intense emotion related to my vision loss, and it was as if several years of pent-up sadness came pouring out. I found myself sobbing on my bedroom floor in what I thought was an empty house. Lucy, who had gotten home early from work, heard me and rushed into my room, probably worrying someone had died with how hard I was crying.
I don’t think I ever intended to hide my emotions from my kids, but in retrospect, I mostly kept my feelings private for fear of burdening them or passing down pitying narratives about blindness. But in this raw, untamed moment of grief, there was little space for philosophy or pride.
Between sobs, I recounted the grief-inducing incident and a litany of fears about the future. I felt small, unedited, and a bit afraid of her response. After all, I’m the parent. Shouldn’t I be the one with the answers, comforting her?
To my relief, Lucy knelt down on the floor with me, wrapped her arms around me, and cried with me. She spoke words of empathy and love, and soon our tears turned to laughter, and we sat on my floor and talked for several hours. It was there that I glimpsed signs of readiness for the world that reassured me as a parent. Yes, university, future mentors, and travel will support maturity and growth. But as both an artist and a mom, I’m proud to have a small part in shaping a character with heart—one who can sit and be present in a wild moment of grief with another human being.
There will be viewers who will never know the characters in your book the way you do. They will never reach for the 1-year-old the way you did when she gleefully chased a flock of geese at the park, trying to pet them, unaware they were hissing, ready to nip her tiny fingers. They will never know the barefoot 2-year-old who chased the ice cream truck at Olympic speed or the 3-year-old who announced there is no such thing as bad people. They will never lay eyes on the 4-year-old dog whisperer in pigtails, or the 8-year-old doting on her little sis. They will never hear the 10-year-old’s sweet songs her teenage self will label “cringy.” And they will absolutely never know the bond between a 14-year-old puppy raiser and a yellow lab named Moon.
Your precious protagonist is walking off the page and onto the big screen, and you absolutely know there are viewers out there who will never read the book. Only you and your readers— the childhood friends, the family, the neighbors— know the original, unabridged version. You anticipate the magic of seeing her come to life on the screen, and yet as a reader and a writer, you know the book is better.
To all parents and young adults making their way into the world, I dedicate the following poem by Mary Oliver. Her words capture the wildness of emotion and the sense of finding one’s place amid the chaos of life:
“Wild Geese” – Mary Oliver
You do not have to be good. You do not have to walk on your knees for a hundred miles through the desert, repenting. You only have to let the soft animal of your body love what it loves. Tell me about despair, yours, and I will tell you mine. Meanwhile, the world goes on. Meanwhile, the sun and the clear pebbles of the rain are moving across the landscapes, over the prairies and the deep trees, the mountains and the rivers. Meanwhile, the wild geese, high in the clean blue air, are heading home again. Whoever you are, no matter how lonely, the world offers itself to your imagination, calls to you like the wild geese, harsh and exciting— over and over announcing your place in the family of things.
May we all find our place in the family of things, embracing the wildness of both grief and joy.
In a culture highly attuned to sniffing out toxic positivity and cringy Mr. Magoo-esque humor, it’s sometimes challenging to find appropriate spaces for light-hearted and humorous stories related to blindness. We share them from time to time but definitely with more caution than when we first began this blog, as we are more aware of how certain stories may be perceived. Perception, however, is exactly why I’m sharing a vision-related misperception that recently made me laugh.
A group of people in a circle singing together at a river beach
I was sitting in a circle singing with a group of friends and family at a nearby beach, and all of a sudden I heard some unfamiliar male voices joining in. Based on the cadence of their voices and the goofy lyrics they were making up as they sang, I guessed they were from a nearby home for young adults with developmental disabilities. I guessed that the older, female voice I heard whispering occasional redirections to them was either their mom or the group home caregiver. After several songs, I heard another girl from the group home come to the boys and tell them it was time to leave.
When the two young men ignored the girl and kept singing, I heard my mom step in and ask one of our friends to escort them up to the parking lot.
As we were packing up our beach blanket, I asked my mom why the woman who was with the teenagers didn’t step in to help.
“What woman?” My mom asked.
“The one who kept whispering redirections and encouragement while we sang.”
“That was me!” My mom said, to which we both laughed.
Later that evening I remarked to my husband how glad I was that our group of singers was so welcoming to the teenagers with disabilities.
“You mean those kids who were high?” Ben asked.
“No,” I insisted. “They were kids with disabilities. That’s why my mom was helping them, and then that other girl from the home came to tell them it was time to leave.”
Ben told me he was pretty sure that was just their friend and that they were just teenagers who had smoked a lot of weed. Unconvinced, I asked several friends who were there, and they not only agreed with Ben that the kids were high but also added that the two guys who sang with us were singing in an exaggerated way to be funny, but also pointed out that they still must have been enjoying singing or they wouldn’t have stayed for so many songs.
So basically the two guys with disabilities and their caretaker were really two kids on drugs being told to settle down by my mom.
The sheer humor of this misconception not only made me laugh, but also made me glad that I don’t have friends and family who are constantly narrating everything that’s going on. I enjoy being allowed to construct my own version of what’s occurring at any given moment, even when it’s hilariously wrong.
When I really think about it, would my awareness of the quote-unquote right visual details of that story really change anything? When it really comes down to the marrow of that scenario, doesn’t the following statement apply to both perceptions? Two teenage boys experiencing a slightly altered reality were welcomed in by a group of singers on a beach, and a motherly figure accommodated their participation throughout whispered encouragement.
As I process this story further, I am left wondering whether I could reverse engineer perceptions of other stories in my life. Since our realities are really based on our own perceptions, are there scenarios I could choose to perceive differently in order to bring in a lighter perspective? Could I allow myself to laugh and have fun re-framing new and old stories alike?
This week I plan to allow my curiosity to frolic and play a bit, and I invite you, curious DoubleVision reader, to join me in a little misperception magic.
Image description: a sunset over a landscape with a complex network of reflective waterways. In the background, dark hills or rise against a gradient sky, transitioning from golden yellow to blue (Photo by Jeremy Bishop)
In recognition of Mental Health month this May, Jenelle and I helped facilitate “Stronger Together: Our Stories Matter”, a conference in Washington state for teens with sight loss and their families. One of my favorite parts of the weekend was the activities led by the Northwest Association of Blind Athletes (NWABA). I’ve always avoided Zumba workouts, so I was delighted to find that Zumba dance classes are actually fun and easy to follow with accessible instructions. I was also surprised by how sore my psoas muscles were the following day after some seemingly simple salsa combos. High knee core twist anyone?
They also led the youth in a game of bocce ball. My husband’s family is Italian, so I’m very familiar with the game and wondered how the players would aim for the small pallina ball, much less know which team’s ball was closest to it. NWABA’s modifications definitely reinforced my belief that humans are inherently ingenious when it comes to adaptations.
The game included a beeping pallina and a tactile map of where each ball was located in relation to the pallina. After each turn, an Orientation and Mobility Instructor could rearrange the tactile pieces in order to mimic the arrangement for any players who needed it. Bravo, NWABA!
One activity they led on the very first evening of the conference, however, spoke to me on a deeper level.
Our task was to arrange ourselves chronologically by birthday (not year, thankfully!) from one end of the hotel banquet room to the other. With over 50 participants plus several interpreters for our parents who were mono-lingual Spanish speakers, this was no small charge.
As we began to meander around the room, I noticed a young college student who was new to blindness standing still, so I asked if she wanted an arm. Ironically, we found that her birthday was right after mine, so by taking my left arm, she was already in the exact place she needed to be in the line. Once we arrived to our proper places, she continued to hold onto my arm and shared a bit of her story, which for confidentiality purposes will remain in the banquet room. I will say, however, that the experience of grief is a shared one, and vulnerability is a gift we give to one another.
When we were all arranged in a line, the person with the very first birthday in January said their birthday and so on until we reached December. I could sense the pride in the room as every single person was in proper birthday order. As each person named their birthday, rippling down the line like an ocean wave on a calm day, another wave came over me. I had trouble naming it at first. Wonder? Awe? Connection? The thought that all of the people in the room were affected by vision loss in some way rolled over me, causing me to hold my breath for a brief moment.
There were youth and some staff with vision loss, siblings, and parents, and everyone was there to support one another. We were all at different places in our journeys. Some had been born with sight loss. Others had recently lost theirs. Some sudden. Some expected. All connected.
As I reflect on this image, it occurs to me that there is a birthday line out there for all of us humans walking this journey we call life.
Have you been betrayed by a loved one? There is a birthday line for you. Are you struggling with regret? There is a birthday line for you. Do you suffer from waves of emotions that sometimes threaten to pull you under? Yes, you too have a birthday line.
A birthday line consists of all of the many humans on this planet who are, at this very moment, sharing in the struggle that you are in. The details of that struggle may vary , and the exact way our brains and bodies process the experience may differ, but the very real emotions that coincide with being human are alike. Disappointment. Anger.. Confusion. Wonder. Contemplation. Joy. And a million nuances in between.
So, DoubleVision friends, the next time you feel alone in your shame or blame or pain, picture the birthday line and feel the connection that ripples through shared humanity. No, it won’t solve your struggle, but there is a softening that occurs when we remember our common humanity.
[Image description: abstract image of a hand gently touching a shoulder with light pouring in from up ahead]
At the beginning of January I flew with my husband, Ben and the girls to meet our extended family in Cancun. I’m a nervous flyer. So when turbulence arose on our 7-hour flight , I quickly flipped through Audible for a calming book. I landed on “Meditations for Breaking the Habit of Being Yourself” by Dr. Joe Dispenza. In my very anxious state, I started working on moving into a more relaxed one. The end of the meditation had listeners ask for some kind of sign to show up that would reinforce the state you want to live into. Without thinking much about it, I asked that I’d meet someone in Mexico who would remind me to relax and have fun. Then we landed in Cancun and I promptly forgot about the plane ride meditation.
Fast forward to day three of our trip. It was fairly easy to relax in an all-inclusive resort, though on this particular afternoon I found myself a bit anxious. Ben and a few others were headed out on a bike ride, and since there were no tandem bicycles, Ben was helping me find a place to hang out by the pool. I was trying to orient myself to the space, locate the nearest restroom, etc to ease my anxiety. Just in case I couldn’t find it, I decided to make a pit stop before lounging by the pool. Ben was about to meet up with others at the bike rentals but waited outside the restroom in order to help me find a good spot to lounge while they biked.
I didn’t want to delay the biking group, so I quickly used the bathroom and was washing my hands when I felt my right ear clog up very suddenly. My body tensed as my brain computed that this is always the first sign of my vertigo attacks, something I’ve dealt with over the past 8 years. I knew that I had only seconds before the spinning would begin, and I didn’t want to be stuck int the bathroom without any way to tell Ben what was happening.
Without stopping to dry my hands, I bolted for the exit, knowing that if I could just make it outside, Ben would at lease be there to sit with me during the spinning in case I fell. I was about 4 steps from the door handle when the spinning hit me, however, so all I could do was turn and lean against the bathroom wall, gripping the flat surface as if handles might magically appear to grasp..
Just then the door opened, and I heard the voice of someone who sounded like a resort employee rushing toward me and grabbing my left hand. “Señora, you okay? You need medico?”
“No,” I managed. “Mi Esposo outside. It’s just vertigo.”
Suddenly I felt someone grasp my right hand and place her hand at the base of my skull.
“I know this is so scary. Vertigo is seriously the worst,” she began, pressing two of her fingers firmly into two points where my neck and skull converge. “But it’s just your eustachian tube filling up. If you press your head into my fingers as hard as you can, I promise you it will drain.” I did as the stranger instructed, suddenly feeling hyper-focused on my one task. Sure enough, my ear became unclogged and the spinning subsided.
“You medico?” The woman holding my left hand asked the woman holding my right.
“No,” she said and continued saying reassuring words to me that I cannot recall.
Once my adrenaline subsided, I thanked the woman on my right, who said her name was Julie. She offered to walk me outside and show my husband the pressure points she had used. I exited the bathroom sheepishly, introducing Ben to my new friend Julie, who quickly showed him the pressure points she had pressed, along with a couple others on my hand that could also help.
“How do you know all this?” I asked. “Are you in the medical field?”
“I’m an energy healer,” she said.
“Interesting,” I paused for a moment, wondering if she would explain further, before continuing. “I’m not sure what triggered this. Doctors have called it migrainous vertigo and gave me a list of foods to avoid. I don’t think I’ve had any chocolate or caffeine, so maybe it’s the extra sugar I’ve been eating.”
When Julie spoke next, her words almost made me fall over. “Well, it mostly comes from taking yourself and life too seriously. You need to relax and laugh more.”
“Well, I guess I was a bit anxious since my husband was leaving on a bike ride, knowing I’d be alone here at the pool. I have a visual impairment, so I get a little nervous in new, unfamiliar places when I’m by myself.” I explained.
“First, I want you to know that you’re never alone,” she said making a wide circular motion with her hands, “You are being watched over constantly.”
I nodded my head vaguely.
“I can tell you don’t fully believe me,” Julie went on. “Know that you don’t have to control life. God is in control. Vertigo episodes will happen maybe a few more times in your life, but once you find your life purpose, it won’t happen anymore.”
I nodded as I took in her words, biting my lip and wrinkling my brow as I tried to process what she was saying.
“And remember. You see a lot, maybe not with your eyes, but you see from here and here,” she motioned to her chest and stomach.
It’s hard to put an experience like this into words because it all comes out a bit flatter than it actually felt. I found myself hugging this stranger, crying and sharing the type of moment typically reserved for close loved ones.
It was only later, once Ben and his brother had left for the bike ride, that I began to really process the experience. As I floated serenely in the pool, the request I had made on the plane ride came back to me. I thought about how serendipitous events like these seemed to occur more when I was younger. I thought about why that might be but then just allowed myself to relax and not overthink it as I floated around the pool.
As I reflect on this now, a month later, I can’t help but wonder if at some point I began to expect less daily miracles. I often ask for the big ones— a relationship to heal or someone to be cured from cancer. But I forget to ask for the small chance encounters, those luminous nudges that remind us we’re all on this uniquely human journey together.
As Jenelle and I head out tonight on a train ride to meet up with our younger sister in Montana over mid-winter break, I plan to expect more small miracles along the way.
Please join me in anticipating luminous nudges in all of our lives.
As we become awake to these small miracles all around us, may we become more aware of their enormity.
Photo description: woman's hands chopping an onion
As we approach the holidays, it’s helpful to revisit the feelings that sometimes come up for people with vision loss during large gatherings involving cooking and food.
I brought this up in a previous post, “Just Keep Tossing the Salad,” to which my husband recently informed this naive, Midwest-raised girl on the innuendo of this phrase, much to my horror. All meanings and laughter aside, helping out in the kitchen when you’re not hosting can be a very vulnerable experience for those of us with vision loss.
While I often learn what doesn’t work from upsetting situations, I also learn what does work from positive experiences. My friend and neighbor, Gabe recently hosted a soup night for our book club, and I was struck by how included I felt in her kitchen compared with previous experiences.
When I first entered her home, I was greeted by the sounds of chopping, stirring and light chatter. I sat on a stool, nervous that I’d be told to just relax or motioned to stay out of the way, as I have been directed in many kitchens. To my delight, Gabe rattled off a few task options she still needed help with, and one included chopping tomatoes. I chose that one.
Gabe placed a cutting board on the counter in front of me and handed me a knife. Besides when I’m at either my parents or Jenelle’s house, no one ever thinks to hand me a knife, and so I took it with a little soar of the heart. I know this may sound silly to many people, but feeling trusted with sharp objects feels like receiving a little nod of “you’re capable”, “you’re one of us”, and even “you belong here”.
This isn’t to say that those who are unable to use knives are incapable or don’t have a place at the table, so to speak,. It’s more about the assumptions that are made about people with vision loss. While there are nifty little utensils like food choppers to help people who aren’t skilled with knives, there are also techniques that people with vision loss can use when chopping with traditional knives. There are blind chefs like one of our fellow Daring Sisters, Regina Mitchell, who teaches non-visual techniques in the kitchen. And many may remember Master Chef Christine Ha, who is blind and won the 3rd season of Master Chef.
“I feel my way through the kitchen,” Christine says in one of her videos, which is unfathomable to some people living in a culture that places sight over every other sense.
I remember once cooking a holiday meal and a family member saying “You’re amazing cooking like this. I mean, you scare the shit out of me, but you’re amazing.” I remember the heat of shame rising up from somewhere deep, as I managed a half smile and a “Um, thanks.” To be seen as capable, as useful, as well, just ordinary, is something I think most humans crave, though there is a certain voracity with which I crave it. I’ve dug into my emotions on this one, and I don’t feel it comes from a place of pride or stubbornness. I believe it falls within the realm of dignity. It’s the same reason that an aging friend who is not as nimble on her feet these days recently told me she’d rather be allowed to fall once in awhile then have her adult children constantly hovering over her when she walks.
Again, this isn’t to say that depending on others equates to loss of dignity. On the contrary, there is often beauty and connection in dependence on one another. It’s when reliance is assumed or asserted as a necessity instead of asking or trusting that it becomes dicey.
So, if you give a twin a knife, she will not take over the kitchen or chop off her fingers. She will use the tactile techniques she has learned over the years. The tomatoes may not be perfectly symmetrical or be chopped at chef speed, but they will be added to the pot, and they’ll simmer just the same
Join us in a conversation on creativity, grief and shame as we sit down with Scott Hodge and Anna Hammond for an interview on The Orchard’s podcast. As always, we’d love to hear from you, so feel free to comment or reach out via email at mail@doublevisionblog.com
Eight years ago, today, Roja and I graduated as a guide dog team from Guide Dogs for the Blind’s San Rafael campus. And now I am planning her retirement party for sometime in October. I hope the celebration feels playful, filled with squeaky toys and frisbees she was not allowed to have as a working dog. Perhaps we’ll sip some wine and have some cheese while cooing over sentimental photos of Roja in her younger years. She deserves at least that much.
I envision The Beatles “It’s been a hard day’s night, and I’ve been working like a dog” playing through the speakers as guests carry cucumbers and carrots to offer her, which she will accept in one full mouthful with wagging tail.
I’m hoping planning these light-hearted details will take the edge off the ache I’m feeling as our working relationship comes to a close. No doubt, she will enjoy her transition from guide to pet immensely. She turned 10 in June, and most guide dogs retire around age 9, though I had been hoping she would follow in the steps of the 14-year-old working German Shepherd I’d heard about in Canada. No such luck, eh?!?
“She’ll let you know when she’s ready to retire,” experienced handlers have advised.
Hints of her desire for the golden years have sprinkled their way into our lives over the past year or so. From her slowed pace to the way she plunks herself down in the the grass mid-walk to balking every two steps on harness, her less-than-subtle body language communicates she is eyeing that 401(k). Fortunately for the both of us, her pension consists of kibble and cucumbers.
While I am thrilled for her, I am sad for me. I am sad for our little duo.
The eight specific years we were a team marked so many milestones in my life. Multiple moves, multiple states, multiple stages of life. Most of those years were pre-pandemic, which in itself makes it feel like a different lifetime.
I so vividly remember my little girls running toward Roja and I to greet us at O’Hare airport the day after graduation, our youngest unable to pronounce her R’s, yelling “Wo-ha, Wo-ha!”, as they smothered her with hugs.
Photo description: Joy and her family at the airport in 2015 with their newest family member, “wo-ha”
My youngest was only 5 when “Woha” came home with us and now she’s taking Algebra and wearing makeup. My oldest was 9 and her small frame was pulled down by Roja’s exuberant strength the first time she tried to walk her on leash and now she’s applying to colleges.
In many ways, Roja’s entrance into my life symbolized key steps in the acceptance process of coping with continued vision loss. She was instrumental in easing me back into the work force. She also helped increase my use of mobility aides, as I’m now more apt to grab my white cane when heading out the door than I was eight years ago.
It’s such a unique bond with another living being that I have difficulty even comparing it to anything else I’ve ever experienced. In some ways, our bond continues. The way she greets me by pressing her entire furry being into my legs for a long hug when I enter our house is the subject of much envy in our family. This connection, however, has more depth than nuzzled greetings.
To refer to her as a mere symbol or, even more crudely, a “mobility tool” feels inadequate. She is a loving presence. A beautiful being. Often, when I’m doing a guided meditation and am asked to picture someone I feel unconditional love from, I picture Roja, with that adoring stare, those wise lab eyes gazing calmly, expectantly. Yes, I know, she is mostly eye-begging for a treat. Roja’s GDB trainer would probably say that I’m personifying human feeling onto her actions and expressions, but I swear, I can feel her loving looks, and they’re not just for kibble.
Like all parts of life, change is inevitable, and we grieve even the good alchemy. I can feel this specific sadness in my body. It runs from the center of my throat down the front of my chest, and through my abdomen. It is a very specific grief, and yet it is almost generalized in its flavor, like the passage of time or the aging of a body. You come to expect it, and yet when it is upon you, you’re just not quite ready.
People ask me whether I’m getting another guide dog, and while I have filled out the application and completed my initial phone interview, I am procrastinating gathering the needed documents. Other handlers tell me your first guide dog is the hardest to get over. I know she’s not gone, and yet there’s a part of our relationship that’s ending, and it feels hard. While there are so many places she took me, and I am so grateful for the milestones we met together, there is a felt absence at the places she once guided me.
At an in-person work event last week, co-workers asked about her and I felt surprised by how much I missed having her there. As those with guides can relate, there are certain aspects that can be more stressful, such as locating a relieving area or worrying she’ll embarrass me by begging for food.
But there are many perks I missed. Like having an excuse to go outside mid-day. I, of course, missed her leading me around, though large crowds and confusing indoor spaces were never her strong suit. But honestly, I mostly just missed her calming presence laying at my feet under the table as we sat during the long day of presentations. Fortunately, working from home most of the time will still allow for those moments for the time being.
As we step into this new phase, I find solace knowing that working from home will still allow for those cherished moments of her company. While it’s a significant change, it’s also the start of a new chapter for us both – one that promises quieter days and a retirement filled with frisbees and cucumbers.
Present-day Roja sprawled out in a very relaxed position on the hardwood floor
My daughter, dressed as Harley Quinn, comes skipping out on stage twirling her pigtail, and settles into a pose with one hand on her hip and the other raised. She grins, leaning forward, bringing one leg up. She does an arial and then twirls her way back to the center of the stage.
For those who read my last post, you know that I am privy to all of these details, thanks to Audio Describer Chanelle Carson. But what you may not know is that audio description is just one piece of access.
Many have referred to vision loss as a “social disability”, which brings up some complex feelings for me, as connection is one of my top values. There are settings in which I feel deeply connected to other human beings, and there are also certain settings that feel especially disconnective to me as a person who is visually impaired.
“There are some places that blind folks just aren’t expected to be…particularly large crowds, hectic circumstances and places of general fun and enjoyment. You can feel people gawking, questioning your legitimacy and fearing your misfortune.”
When I first read Butler’s words 10 years ago, they struck a chord and have floated back into my consciousness from time to time, especially while at large events. They’ve also given me language to express why I don’t typically feel comfortable walking around with my white cane at dance competitions. I don’t bring my guide dog, Roja, due to the loud music, and I tend to link arms with my husband and then plant myself in an auditorium seat for most of the competition. Seems simple and easy, right? Not exactly. For years, I have walked away from long weekends of dance competitions feeling isolated, especially when my daughters were younger and needed “dance mom” support that I wasn’t able to give them.
I have often found myself envying the other moms, particularly the ones who bounce quickly out of their seats the minute their dancer’s song is over, rushing backstage to congratulate their dancer or to hug them when a performance hasn’t gone well. They rush with their makeup and hair bags, ready to magically accessorize and prep their dancers for the next act, and they do it all at a speed I can’t comprehend.
Meanwhile, I sit in my seat and try to muster the courage to make my way through a crowded auditorium into crowded hallways in search of a crowded bathroom, as I’ve been “holding it” for the past 10 songs, afraid I’ll miss my daughter’s routine since the estimated time for navigating to and from the ladies’ room is unpredictable. Inevitably, my stomach rumbles with the gnawing feeling of shame and mom guilt over spending so much time trying to take care of my basic needs while my daughter’s team members all seem to have moms that are flitting around at lightning speed doing helpful dance mom things backstage.
I have been backstage once in my 7 years as a dance mom, when my younger daughter, Elli, was in 2nd grade and about to take the stage for her duet. A well-meaning mom led me through the dark passageway and sat me on a stool and then disappeared into the dark void. I had no idea where Elli even was, and the music was so loud that I couldn’t use my sense of hearing to fill in the details. There was only one thing I knew for sure: I was sitting backstage like a piece of furniture while the other moms interacted and connected with their daughters and each other. I longed for just one person with whom to share Access Intimacy, but this was not even a term in my vocabulary at the time. That was just 5 years ago, and I now have multiple definitions to describe the concept.
I’ll begin with the fancy academic definition and then break it down.
“Access Intimacy refers to a mode of relation between disabled people or between disabled and non-disabled people that can be born of concerted cultivation or instantly intimated and centrally concerns the feeling of someone genuinely understanding and anticipating another’s access needs” (Desiree Valentine)
Simply put, Access Intimacy is when someone is WITH a disabled person in accessing needs as opposed to separating themselves into the role of “heroic helper”.
I consider people with whom I share Access Inimacy people who “get me” and my vision needs without necessarily having to ask specifics. This is vulnerable and blunt for me to say, but when someone tells me they need to know exactly what my vision is like in order to help me, I automatically feel distanced from that person.
I am a curious person by nature, so I understand natural curiosity, but I can also feel when it’s laced with something else. Discomfort, maybe? Judgment? I’m not exactly sure what it is, but let’s just say it’s very obvious when my lack of vision is the only thing on someone’s mind.
When embarking on a hike with a group of friends a few years ago, for example, one friend asked, “Joy, how do you want to be treated on this hike?” Yes, she had curiosity, but the way she phrased it left me feeling confused and speechless. Fortunately, another friend with whom I have Access Intimacy quickly replied with humor. “Yeah, do you want us to throw rocks at you as you hike?”
For those I am closest with and share Access Intimacy, my visual impairment is a secondary characteristic and not something they seem to be thinking of while we’re spending time together, though they’re aware of my needs as they arise.
Fortunately, I have experienced Access Intimacy with both strangers and friends many times over the years, and certain instances have helped me further define the term.
One of these instances occurred at Lucy’s national dance competition last year.
I had been at dinner with some parents and shared about my blindness with the partner of one of the dance moms on Lucy’s team. Since she herself had disclosed a hidden disability and also has racial and sexual orientation identities that fall outside of the “dominant norm”, I immediately felt the empathy of someone who daily navigates challenges on multiple levels.
Yet I was still surprised and delighted when she turned to me after one of the dances and asked if I’d like her to accompany me to Lucy’s dressing room. To her it might have seemed like a small gesture, but to me, it allowed me to enter a space I rarely get to go. I was able to hug Lucy, congratulate her and even bring her water. It was small, but it mattered largely. On the way back to the auditorium, she thought to ask if I’d like to make a quick stop by the bathroom and then the snack bar. She helped me in a casual, effortless way, not hovering over me awkwardly or making a production out of guiding me. With laughter and lightness, she managed to transform a stressful arena into a comfortable one. And that, ladies and gents, is Access Intimacy.
Lady Gaga’s “Just Dance” pulses through the speakers, and the vibrations reverberate across our chairs, drawing each audience member into the moment. “She’s flipping across the stage,” my husband leans over, whispering. My heart beats faster and I realize I am holding my breath.
“Now she’s doing flips and kind of bounces into a group of dancers who push her back, and then… um… she keeps dancing.”
Huh? That last description kinda of confuses me, but I have some interesting images in my mind. It is Nationals in Seaside, Oregon, and the competitors are fierce. I’m on the edge of my seat. I strain my neck to see, to catch a glimpse of my daughter, Lucy. I have the vague conception of where she is at based on my husband’s descriptions, but each time he tells me she is front and center, it’s as if a flash of color darts across the stage, and the moment is over before Lucy materializes into anything my retinas can recognize.
“She’s leaping and doing aerials across the stage,” he continues, his voice a mixture of awe and euphoria. Tears spring to my eyes. Tears of joy that my daughter has found an art she both excels at and loves. Tears of gratitude that I can be here to witness it. Tears of pain because I want to see it. To really see it, not just listen to a few whispered movements after they’ve already occurred. I want to know why the audience is cheering at certain moments. Moreover, I want to cheer alongside them
I want details that my spouse, having no dance background, cannot possibly find words to describe, much less whisper loudly into my ear amid blaring base at a pace even a speedy auctioneer could not match, especially while trying to take in and enjoy his daughter’s performance himself.
I lean forward intently, as if doing so will somehow convince my retinas to give me the images I desire. It doesn’t.
I want to know what shape her form is taking exactly as the music rises and falls. I want to know the details of each costume and whether her hair is pinned in a low bun, braided or flowing freely. Most of all, I want to see the facial expressions the other parents keep raving about every time they see me.
“I just LOVE watching Lucy,” they say, “her face is so expressive.” I find myself feeling jealous of these other parents. It feels as if they all have a front row seat, and I’m stuck in the back behind some dude wearing a top hat. It doesn’t seem fair. Shouldn’t I get to glimpse my firstborn in her joyful, expressive art?
As the last beats fade and the dancers exit the stage, I have the urge to call after them “Come back, I missed a few parts!”
Fast forward six months to January, and I’m listening to my friend, who I’ll call “Accessible Annie” for reasons that will soon become apparent, describe a live musical she has just watched with audio descriptions. For those readers who may not be familiar with audio descriptions, they basically describe everything that is taking place in a show or movie in real time. I first watched and posted about a movie theater experience watching “Paddington” back in 2015, as it felt like a game changer. It was somewhat new technology at that point, but now I very rarely watch anything without turning on audio descriptions. Most Netflix shows and movies have it as an option, and my family immediately turns it on when we sit down to watch something together, sometimes even when I’m not there just out of habit. Plus, my husband says he sometimes hears details of facial expressions and actions he at first missed even though he is fully sighted.
I discuss this with Accessible Annie and lament how I wish there was a way to have someone describe my daughter’s dances at competitions.
“I know someone who might be able to help,” Annie says. Of course she does. Annie is one of the most proactive, well-researched activists I know. When both Delta and Southwest Airlines began requiring service dog forms that were not accessible, she immediately file complaints (compared with me, who just complained in my head but did nothing!) When a hotel gave her and several other guide dog handlers inaccessible forms with ridiculous cleaning fees listed for handlers who leave their guides in the hotel room, she acquired support from a law professor and his students to challenge the hotel. Typically, she has found a way to hold companies to higher accessibility standards, though it has taken a lot of her time and effort, and not all battles have ended resolutely. The traveling Immersive Van Gogh Exhibit, for example, never followed through with implementing audio descriptions or even any tweaks to make the exhibit accessible. Overall, her efforts have paid off, especially her joint efforts in a lawsuit that resulted in accessible mail-in ballots where she resides in Florida.
It’s interesting that my first instinct is not to bother trying to make things accessible. I’m not sure if it’s because I worry the outcome won’t be worth the effort or whether I don’t want to inconvenience someone. My inner critic chalks it up to laziness though my compassionate self gently reminds me that I am juggling a lot at this stage in my life so I’m just a bit tired.
Sometimes it’s precisely our exhaustion with a circumstance that gives us the energy to do something about it. So when Annie gave me the contact info for Chanelle Carson, who audio describes for live productions in Las Vegas like Cirque du Soleil and other touring shows, I reached out to her right away. I was nervous my project would seem too small for her or whether it would be too expensive for me to afford. When she came back with a very generous offer that I could afford, I finally let myself get excited about the prospect.
Fast forward once again, this time to President’s Day Weekend, just one week ago in Coeur d’Alene, Idaho, and I am fidgeting nervously with my AirPods as the act prior to Lucy’s exits the stage. I need to hit the play button at precisely the right moment, and I’m nervous I’ll miss it, so I hand my husband my phone and say “press play the second you see Lucy coming onto the stage.” A few seconds later, they are announcing Lucy’s solo act, and simultaneously Chanelle’s voice sounds in my ears, welcoming Lucy to the stage. I am immediately immersed in the dance via Chanelle’s real-time descriptions. When I watched Lucy in the past, I did catch glimpses of her movements if she happened to move directly into the 4-degree straw through which I see, but only when the light happened to catch both Lucy’s form and the attention of my retina simultaneously, so possibly one or two moments during the performance. But here, now, watching her dance with audio descriptions, it’s as if each glimpse is strung together into moments my brain can comprehend. It’s not just the technicality of the movements, however, it’s the meaning conveyed in the descriptions. The tone of the descriptions matches the tone of the movements, and I hear the story the dance is narrating. “Crushing, as if being hit in the stomach, she brings one leg back, leaps in the air, and makes her way to the right side of the stage.”
In Chanelle’s email with the recording, she has sent detailed descriptions of each routine’s costumes, so I know have a mental image of this as I listen to the descriptions.
When I hear her describe a particularly challenging move, I know exactly why those around me are cheering, and I join them, only unbeknownst to them, I am cheering for multiple reasons. “Yes, go Lucy!” And YES, go accessibility! It is worth the effort. To engage with art. To engage with life. To feel and be connected to the world around you. Accessible moments matter.
(Note: I’ve posted a video below of Lucy’s solo dance with audio descriptions. by Chanelle Carson. Lucy is earring a nude leotard, her hair is in a low bun and there is a faded, painted red hand print on her right leg. She is dancing to “Your Power” by Billie Eilish)
