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.