Tag: retinitis pigmentosa

As we step into a new year, we wanted to pause and share a few updates about the DoubleVision Podcast, why we’re doing this work, and where we’re headed next.

We launched the podcast in October with a lot of excitement and, honestly, a fairly ambitious plan: weekly episodes. It didn’t take long for us to realize that while we love this medium, it requires far more time, energy, and care than our blog posts ever did. Recording, editing, reflecting, and preparing these conversations asks something different of us.

By November, we made the decision to slow the release schedule to every other week. That shift wasn’t about doing less. It was about doing this work in a way that feels grounded, thoughtful, and sustainable.

We released our final episode of the year just before the holidays, and today we’re sharing our first episode of the new year.

Why We’re Doing This and How You Can Help

At its core, this podcast is an offering.

We continue to show up for these conversations because we feel called to do so. Talking openly about identity, disability, grief, access, belonging, and the emotional realities of vision loss matters to us. These are conversations we wish had been more visible earlier in our own lives, and we believe there is real value in creating space for them now.

This work takes time, care, and emotional energy, and we offer it freely to the community. If the podcast resonates with you, the most meaningful ways to support it are simple: subscribe so new episodes show up automatically, rate and review the podcast on your listening platform, and share an episode with a friend or family member who you think might benefit from listening. These small actions help the podcast reach others who may need these conversations too.

Today’s Episode and an Important Conversation

We’re especially excited to share today’s episode, which continues our two-part series on identity and releases alongside a powerful conversation with Adam Mock.

Adam is a Leadership Coaching Specialist, keynote speaker, and the author of Rescue Your Dreams. He brings more than twenty-five years of experience helping individuals and teams grow in clarity, confidence, and purpose. His work spans corporate, athletic, and educational spaces, with clients including Olympic athletes, Nike, PayPal, Jordan Brand, and Converse.

In this episode, our conversation centers on identity at its core. Not our roles, achievements, or losses, but who we are beneath them. We explore the difference between being and doing, how identity is shaped and protected over time, and what it means to move forward with intention, especially at the beginning of a new year.

What We’ll Be Exploring This Year

Many of our early episodes focused on grief and identity, and we’ll continue to return to those themes with more depth and nuance. As the year unfolds, we’ll also be exploring additional aspects of the social and emotional journey of vision loss, including:

• The backstage of disability and what rarely gets talked about
• Shame and how it quietly shapes behavior and self-perception
• The complexity of receiving help and negotiating independence
• Rewriting the stories we’ve inherited about ourselves
• Identity, belonging, and how they evolve over time
• Access, intimacy, and relational dynamics

Some episodes will be deeply personal. Others will be conversational or reflective. All of them are rooted in lived experience and a desire to name what often goes unspoken.

A Special Thank You

This podcast would not be possible without the support of our small but mighty team. We want to extend a heartfelt thank you to Tracy Schakohl, our producer, whose steady presence and care help bring each episode to life, and to Benjamin Jay Thomas, our media and tech specialist, who supports the behind-the-scenes work that keeps everything running smoothly.

We’re deeply grateful for the time, creativity, and commitment they bring to this project.

Thank you for being here. We’re grateful for everyone who listens, reflects, and walks alongside us in these conversations. We’re looking forward to continuing this work together in the year ahead.

With appreciation,

Jenelle and Joy

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As both a writer and an educator, I often find myself tasked with explaining things—breaking concepts down, putting them into words, making them make sense. But as I move through life with less and less vision, I’m becoming more aware of the things that don’t need explaining at all. In fact, there are entire realms of experience—felt, embodied, intuitive—that speak for themselves if we’re quiet enough to listen.

A while back, the word sight-splaining came to me. I genuinely thought I was coining the term. It turns out it was used during a 2019 AFB (American Foundation for the Blind) conference in the context of advocating for systemic change. So perhaps the phrase was already out in the ethers, floating around, and simply made its way to me.

Sight-splaining happens when a sighted person describes something visual to a blind or visually impaired person—something that person could easily interpret through other senses or their own direct experience. It’s a bit like mansplaining—a term that describes when something is explained, usually by a man to a woman, in a way that feels unnecessary, condescending, or obvious. When I picture my husband mansplaining (which thankfully doesn’t happen often), I imagine him over-explaining something I already know. Sight-splaining, like mansplaining, is usually well-meaning. But it can still reflect a subtle assumption that vision is the most valid or complete way of experiencing the world.

Let me offer a couple of examples.

During a yoga class, the instructor handed me a ball and then carefully described how it was squishy—softer than ones typically used in class. While I appreciated her intention, it struck me as a bit amusing. I was literally holding the ball. I could feel it.

Then, at a water aerobics class, a classmate turned to let me know that parts of the pool floor were smoother and more slippery. First, it was kind of funny—we were in the water. If I slipped, I’d still be in the pool. Second, I have feet. I could easily figure it out myself.

These moments highlight how we often prioritize sight as the primary way of understanding the world—sometimes forgetting the richness of other ways of knowing.

Recently, at a music gathering, I was struggling emotionally. I didn’t say anything—not in conversation or through body language. There was nothing visible to suggest I was having a hard time. And yet, as we stood singing together in a circle, the friend on my left gently squeezed my shoulder. The friend on my right reached out and held my hand. It was clear they both knew. Not through sight, but through presence. Through attunement. Through a deeper kind of seeing.

And here’s the thing: even as I write about it now, I can feel how trying to describe the moment somehow dims it. There’s something sacred that gets lost in translation when we try to pin soul-level knowing into words. That’s what I’d call soul-splaining—trying to explain an experience that was never meant to be explained, only felt. There’s a vague sense of what happened that a reader can grasp, but no retelling can replicate the depth of what I experienced in that moment.

Of course, it’s important not to confuse sight-splaining with genuinely helpful audio descriptions, which allow me to tune into moments I might otherwise miss. A family member recently described what was happening during a hibachi dinner—the chef tossing eggs in the air, flipping utensils, preparing the food with flair. It gave me clues to the shared moment we were all enjoying together. The same goes for the person I hired to audio-describe my daughter’s dance performance—something I wrote about in my Blind Dance Mom post. These kinds of descriptions are beautiful, thoughtful ways of including—not assuming.

So here’s a question I’d like to leave you with:

When you find yourself grasping for words to describe something, whether a felt experience or something you really want the other person to understand, take a brief pause to get curious about what’s behind the need to describe it. Is it something the other person, sighted or blind, may be able to intuit themselves?

Sometimes, in that space before we reach for words, we discover that the experience is already whole.

As Helen Keller once put it, “The best and most beautiful things in the world cannot be seen or even touched—they must be felt with the heart.”

The last few weeks were filled with mixed emotions as I attended the funeral of my beloved father-in-law on June 21st, and the wedding of my dearest friend the following Saturday. At both events, I felt the warmth of connecting with my community of family and friends. And at both events I noticed how my blindness impacts my sense of belonging in these community gatherings.

I was delighted to reconnect with loved ones, some I had not seen in person in many years. However, the cloudiness that has slowly settled over my central vision in recent years made it difficult for me to recognize faces as I once could. While I still had the strong desire to run up and embrace people, I found myself waiting for them to approach me. This was frustrating because it didn’t feel in alignment with my personality or sense of self. 

I also felt acutely aware of what others may be thinking/saying about me as I did my best to navigate each new environment. I longed to move with ease and fluidity as the sighted people around me seemed to mingle effortlessly. There were many times when I wanted to be able to help my grieving loved ones or my celebrating friends with all the details that go into hosting a major event. Yet, once again, my outward appearance seemed misaligned with the intentions of my inner self-  

I found myself returning to an old story that goes something like this, “I don’t belong in these spaces. My blindness makes other people uncomfortable. They want me to be different and to show up more like they do”. 

I have no way of proving if this old story is false or true. And it’s hardly that simple. This old story is rooted in stories that I have lived from a young age – times and places in which I felt wrong for showing up as I am. Experiences that taught me that the way I am is awkward, perhaps humorous, and doesn’t belong.

I used to internalize these experiences – assuming there was something wrong with me, that perhaps I was being too sensitive or imagining the awkward encounters. But then I started connecting with other people with lived experiences of disability and found so much overlap in our experiences that I could no longer categorize them as a “me thing”.

I was reminded of how much of my stories mirror those of my disabled peers on the Tuesday between the funeral and the wedding. Joy and I co-facilitated a day-long staff training for the Department of Services for the Blind summer YES2 program that included a section on exploring lived experiences of disability. Joy and I listened as staff members shared story after story of situations in which they were stigmatized, excluded, and discriminated against in both overt and covert ways. I was reminded of the complexities that accompany moving through the world in a body that is different from the majority. So many complexities that cannot be pulled apart in a single blog post. 

What I will focus on is validating that past and present stigma about blindness is real. It’s not something that myself or my peers with vision loss are creating or imagining. It happens in the workplace, in public settings such as the grocery store, and in community gatherings. And when left unprocessed, it compiles over time, like an overflowing trash bin left unemptied.

While I am a proponent of positive reframes, I want to make sure I’m leaving room for the messiness that living outside the “norm” may look like. This means leaving room for all the emotions and grief that may accompany being in spaces that are designed for and by able-bodied people. As I reflect on the ways I’ve witnessed, experienced, and participated in othering, I am certain that this is not easy work

So today, my reframe is this: The work of processing these stories is not mine to do alone. This work belongs to all of us because we all belong to a society that stigmatizes what is different or unknown. 

I don’t pretend to have a recipe for this work. I view this process as more of an art, requiring us to peer outside our own lived experiences to connect with what other humans may be feeling or needing. It’s the art of noticing our own limiting beliefs about others and challenging what we think we know. It’s less about putting ourselves in someone else’s shoes, and more about connecting with who is in front of us with openness. It’s my hope that engaging in this process will shift old stories for all of us.