Small Miracles Still Happen

[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.

If You Give a Twin a Knife

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

An Open Letter to…

I recently wrote a letter to some dear friends prior to a group vacation. I felt so encouraged by their responses that I am choosing to share it with Doublevisionblog readers in hopes that it may feel supportive to anyone who may be on the verge of communicating their own vulnerable truth.

Writing this letter is a vulnerable experience for me. I am tempted to have ChatGPT write it for me, and yet the actual process of writing this letter feels just as important as the final draft. 

As I lose more vision, I’m continuing to adapt to the physical world around me by using a white cane, learning new assistive technology techniques, and asking for help when needed. What I can see from day to day is often unpredictable and depends on variable factors such as lighting and my physical well-being (how much sleep I’ve had, etc). I’m often not sure what I need and find it helpful to take it day by day.  

I’m reaching out before our time together b/c I imagine it might be confusing, perhaps even frustrating at time, to know how/if/when to offer me assistance. I often don’t know these answers until I’m in the midst of a new environment and sometimes find myself freezing b/c asking and receiving help isn’t easy. It can be a painful reminder that my body does not work like those of most of my peers. I often feel small and objectified in these situations. At times I feel tempted to hide away and no longer fully engage in social activities. But I also know that would not serve my well-being or yours. The relationships we’ve formed over many years are mutually supportive, and I don’t want to let fear or shame diminish these vital connections.  

So writing this letter is part of my healing journey. It’s a way for me to offer some guidance around helping me in ways that ideally allow all of us to feel confident and empowered. Some of the fears that come up for me while making these requests are that I’m being “extra” – too self-centered and may be perceived as demanding, that being my friend will feel like a chore or a burden rather than a joy. It’s painful to name these fears and brings up a lot of emotions. As painful as it may be, I am ready to let go of any relationships in which that is the perception. I know that I have value beyond my physical abilities. I also know being in my life may require resources such as time, patience, and creativity. My expectation is not perfection from myself or anyone else. The guidelines I’m listing below are merely that – a basic guide to what feels supportive and what does not.

There’s no need to walk on eggshells or get awkward. Rather, I invite you to join me in the messiness of adjusting to life circumstances I did not choose, but that I am choosing to embrace. And to laugh WITH me about how corny that may sound.  

Supportive Vibes 

  • Allowing me to navigate with my mobility device – that is literally its job, to provide me with tactile information about my surroundings. 
  • Offering an arm in situations where navigating with the cane may be more challenging, such as a small crowded restaurant. 
  • Educating yourself and others about the experiences of living in a disabled body. Two of my favorite books on the subject include “Sitting Pretty” by Rebecka Tausig and “The Country of the Blind” by Andrew Leland 
  • Including me in the present moment by providing audio descriptions of surroundings. Ex: “There is a lady wearing glittery fairy wings off to our right”, or “There’s a dude on the corner holding a sign that says the world will be taken over by aliens in 3 days”.  
  • Giving visual descriptions of photos and follow-up details when saying things like “Look at that!” or “It’s over there”. Ex: Adding details using a clock, such as “Your fork is at 3 o’clock” or “Your shoes are two feet to the left of you”.
  • Avoiding any grabbing, pushing, pulling or taking control of any part of my body. Instead, invite ME to hold YOUR elbow to provide sighted guide.
  • Noticing and avoiding any temptation to treat me like I’m a child you need to steer or keep track of. I’m an adult who may get lost at times and that’s okay.  
  • Including me in activities you’re not sure if I can do in the same way as you. This allows ME to choose if a certain activity feels too risky or challenging. Ex: “This is going to be a steep hike with lots of rocks. How are you feeling about that?”  
  • Set boundaries that work for YOU. Ex: “I am going for a run and want to run at a fast pace. I won’t be able to provide any sighted guide for this activity.”  
  • Be creative WITH me. Ex: “I was hoping we could rent bikes on this trip, perhaps there’s a tandem bike option we can check out together”. 

Thank you for taking the time to listen to me and gain a better sense of what this experience of slowly going blind is like for me. Please ask me any follow-up questions you may have. 

Seeing the Unseen

In honor of World Mental Health Day earlier this week, we’d like to highlight the intersection of mental health and vision loss, we are sharing parts of our recent presentation at the 2023 Olympia Vision Fair. We titled it “Seeing the Unseen: A Discussion on Mental Health & Vision Loss”. The goal of the presentation is to address the psychological impact of losing sight in an ableist society.

We’re inviting the Doublevisionblog community to participate in similar ways as our Olympia audience. We’ve listed 10 limiting beliefs below. As you read the below statements, tally how many of these hidden limiting beliefs you’ve thought or expressed about yourself or someone else with a disability.

  1. I’m a burden.
  2. I don’t have value.
  3. I’m not enough.
  4. I don’t belong.
  5. I’m less than.
  6. I’m stupid / not smart.
  7. I need to blend in.
  8. I’m powerless.
  9. I’m not capable.
  10. I’m helpless.

It’s important to recognize that having these thoughts about self or others does not make them true. Identifying and naming limiting beliefs is a primary step towards unpacking them in a meaningful way. While these limiting beliefs may be painful to explore, having these thoughts doesn’t make you or anyone else a bad person.

Recognizing where these beliefs stem from is an essential part of understanding how these beliefs crept into our internal experience. Learning the history of disability sheds light on how these limiting beliefs formed. For example, did you know that from 1867 to 1974, it was illegal to be disabled in public in various cities across the U.S? Google “the ugly laws” to learn the ugly history of how disabled people have been treated. We know that the changing of laws does not erase the stigmatization. The ugliness lives on in the limiting ways we perceive and treat people who don’t fit the standards of “normal”.

Offering ourselves and others compassion in the midst of these harmful beliefs can be empowering. The research that supports this claim is strong and we have experienced the power of self-compassion practices in our own lives. Here’s a link to some of our favorite guided self-compassion exercises.

Finally, seeking connection with others who share lived experiences often leads to a stronger support system resulting in better mental health outcomes. None of this is new to our Doublevisionblog readers – we have highlighted the benefits of communities such as Daring Sisters retreats for blind women (and now men, too!) for many years.

Our intention in sharing our own lived experiences including struggles with limiting beliefs, is to normalize and validate the lived experiences of our readers. In doing this, it is our hope that you will feel empowered to continue moving through your own personal journey with curiosity and compassion.

Retiring Roja

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

Access Intimacy 101: Why do Some People Just ‘Get It’? (Aka: Blind Dance Mom Part 2)

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.

To unpack this further, I’ll need to reference an article written by reporter, Will Butler, as he chronicled his experiences at SXSW back in 2013.

“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”. 

Jenelle and I dove into the origins of this term in previous posts, but wanted to share this additional definition as it implies that Access Intimacy can be both natural and cultivated. 

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.

Squad Goals (with audio descriptions)

This is “Squad Goals (with audio descriptions)” by Joy Thomas on Vimeo, the home for high quality videos and the people who love them.

Blind Dance Mom: Accessible Moments Matter

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)

How Do You Spell Ophthalmologist?

Joy and I recently traveled to WA’s state capitol to speak at the Olympia Vision Fair, hosted by the Hope Vision Foundation. Highlights from this trip included eating a chicken pot pie the size of my head (more please!) and meeting the founder of Hope Vision Foundation, Dr. Erin Seefeldt. 

Ophthalmologists often play a memorable role in our experiences of vision loss. Yet mystery seems to surround the world of ophthalmology, from the strange spelling that requires spell check EVERY time to the often silent figure behind the clunky eye testing apparatus. Meeting such a warm, personable ophthalmologist (thanks again spell check), prompted me to create a quick “Ophthalmologist Q&A with Dr. Erin Seefeldt”. 

Q: What inspired you to create the Hope Vision Foundation?
A: As an ophthalmologist I see many patients with conditions causing vision loss. From my training, I knew that vision rehabilitation existed and had trained at the American Lake Blind Rehabilitation center. The resources and professionals there are amazing. Then I realized that for non-veterans the options were not as robust and there were barriers to getting rehabilitation. These were personal and system issues. It is not easy to refer patients or learn about the services in each area. We also don’t have the time built into our schedule to really talk and listen to patients about how they are adapting to vision loss.  I founded hope vision foundation to create a resource for our community that allows all patients with vision loss to connect to resources. 

Q: When you were in medical school, what type of training did students receive on how to communicate with patients about a diagnosis of vision loss?
A: In medical school and internship we receive training on ‘breaking bad news’ but no disease specific training. We were given techniques to use and practiced with simulated patients (actors). This was fairly new when I trained and in practice every patient is different. The better you know your patient the better you can communicate a difficult diagnosis with empathy. 

Q: What do you wish more eye doctors / eye care specialists could learn about working with patients who are experiencing vision loss?  
A: I wish more eye doctors could learn from patient’s with vision loss how it impacts a patient’s activities and relationships. I also think it would be helpful to train doctors about low vision devices (high and low tech) and techniques. All doctors should be given basic training on interacting with people with hearing and vision disabilities. 

Q: What is one critical piece of advice you’d like to share with people who are currently adjusting to vision loss?
A: Understand your reason for vision loss and what to expect over time.  Knowledge is power and often not knowing can lead to worrying more and imagining the worst. 

Readers: What other questions do you have for Dr. Seefeldt? We can include your questions in a future Ophthalmologist Q&A

 

The Best Description of RP We’ve Ever Seen (In Honor of Blindness Awareness Month this October)

Hello DoubleVision friends. We typically try to post an informative piece about Retinitis Pigmentosa and/or blindness during the month of October in honor of Blindness Awareness Month. Our good friend and fellow RP-er, Keith, recently shared this New York Times video about RP, and it’s honestly the best portrayal we’ve ever seen, and we love the visual simulation of what people with RP tend to see. We’d love to hear your thoughts on the video as well.