What it means to be visibly invisible

What it means to be visibly invisible

I am a writer and author. Additionally, I am a Black woman with albinism. Albinism is a rare genetic condition resulting in little to no pigment in the hair, skin, and eyes.  While albinism in the United States is not considered a disability, being legally blind is.  And that is what I am. I have been making sense of the world with affected vision owing to the lack of pigment in my eyes.

 I was never allowed to use my lack of vision as justification for not doing chores, being a good student, etc.  In this way, my biological mother could and did place her head in the sand about the challenges I faced.  I was told to try harder, to utilize every bit of vision I possessed, and most importantly, I was told that I wasn’t disabled.  By denying a key part of what made me “me,” I learned to hate my vision, to hate myself. I strove to be “normal.” I internalized this belief while becoming fiercely independent.  

In my early adulthood, I discovered the disability community. I no longer needed to hide what I couldn’t see, that I couldn’t see like the clearly-sighted could. Yet, the sense of community was short-lived. I was told I wasn’t disabled enough. I could pass as normal. Again, I internalized this to mean I did not belong. 

 The truth is that I have a lot of functional vision. Consequently, I figured I just needed to use what I had.   

I created a multitude of life hacks for navigation which became rote for me.  In my early adulthood, I moved to a different city. I gained a tremendous appreciation for bus drivers who named street stops. This is how I learned San Francisco.  Presently for Bart subway stations I frequent, I know exactly how many stairway steps there are from platform to exit level. This is the same within my home. Five steps to the front door, eight steps from main level to upstairs, six steps from main level to downstairs, step to enter/exit the back yard from downstairs. My brain holds a lot of information, much of which is practical and honestly designed to both maximize my independence and to preserve my safety.   

 Then, there are the parts I don’t discuss. The embarrassment of failing to see an obstacle as I lay on the ground regaining my bearings, assessing if I am hurt. Me telling myself “I will not cry” while concerned strangers hover over me.  The loneliness of not seeing what everyone else sees, or missing visual cues which leaves my face hot, feeling awkward and inadequate for things I have no control over. The fear I overcome each time I am invited to an event, not knowing if I will be able to identify if someone I know might be present.  These experiences often have left me in tears because I could not see well.  

 There is also the cultural piece. Of people, other brown and Black people questioning my blackness. The instances are so many I lose count. 

 In time, I would come to unlearn much of what I was taught by my family.  Instead, I began to trust other ways of “seeing.” I embraced trusting my intuition, using auditory memory, and at times outright conveying to people that I am legally blind and consequently may require assistance.  

 There have been so many life learnings about embracing my vision, celebrating what I love about my eyes and surrendering to utilizing aids and equipment.  The journey to embracing my vision is much like having albinism. Layered. I have reached a point in my life that 90% of the time I love who I am and what my body is capable of.  I have learned to celebrate moments when I am clearly experiencing a great vision day. Meaning I randomly am able to read a sign which normally I struggle with.  I bypass a sidewalk obstacle. I am gentle with myself when the opposite is present. I acknowledge the challenge and tell myself out loud, “oh sweetness, it’s ok.”

 These words I understand now are the ones I wished I’d heard growing up from my parents. 

 I am grateful to possess as much vision as I do. I bear more gratitude for learning to embrace and incorporating all the parts of myself.  And yet, there are the days when the struggle is a tug of war and I lose the rope.

 I had one of those days recently. I missed a step while descending into a Bart station. For days, I analyzed what I could’ve done differently. I didn’t fall, I reminded myself. Only a stumble.  The bruise on my left forearm served as reminder of the misstep.  As my physical body heals, so does my mental/emotional body. The immediacy of visually impaired issues lessens as I return to center.  

 There are a multitude of things I do to make my life work which in ways are unconscious. As I approach an upcoming public appearance where I will be reading, I take stock of the additional preparation involved.  I may not disclose my visual impairment to the audience; however, as soon as I begin to read from the iPad, it is evident.  

 There is a level of vulnerability inherent in having a disability. My belief is not everyone has a right nor needs to know about mine. This is a personal choice. I can only speak for myself as someone else may view their situation differently. Society and culture have had a huge impact on how disability is both perceived as well as accepted or denied. In my lifetime, language has changed from handicapped to disabled or differently abled.  Albino to person with albinism. Sight impaired to visually impaired. All serve to humanize the person, not the diagnosis. This shift allows me the ability to stand proudly in all the ways of who I am.  When doubt seeps in as it invariably does, I remind myself that my experience is not unique.

 There are millions of people with disabilities. I am worthy of having needs, of living a full vibrant life and most of all, I am exactly who I am meant to be.