A Wedding, A Funeral, and An Old Story

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.