Thursday, June 11, 2020

Myths About Blindness

Amidst the current resurgence of the Black Lives Matter movement, I have come across admirable efforts to educate. I have appreciated the black creators of literature, podcasts, music, and memoirs for helping me better understand racism. I have benefitted tremendously by the willingness of people of color to share their experience to inform white people like myself who have not experienced racial oppression.  I write this not to dilute or distract from the potency of racism in the United States, but instead because I wish to share in efforts to elucidate realities about marginalized experiences. Before my vision deteriorated, I admittedly had no concept for blindness.  My lived experience and connection to members of the blind community have given me a more nuanced perspective, and I hope to share this information to help answer questions or clarify misconceptions about blindness.

Myth: Blind people see all black.
Fact: Blindness is a spectrum, and many blind people have some functional vision. On one end of the blindness spectrum is seeing absolutely nothing. Though I haven't had this experience, I have heard that for most, the experience is not seeing all black, but instead is an absence of sight. Have you eaten something with your nose clogged - and not kind of clogged,  but completely totally clogged? If so, you have likely experienced being unable to taste. You could not describe the flavor because there is an absence of information. That lack of input is what blindness is like. There simply is no visual information. On the other end of the blindness spectrum is the threshold of legal blindness. A visual acuity worse than 20/200 with correction (glasses or contact lenses) constitutes legal blindness. This means that even with correction, the legally blind person sees from 20 feet away what a typically-sighted person can see from 200 feet. Although everyone’s visual experience is a little different, for me, when I saw 20/200, I could recognize people around 15 feet away and read print using enlarged text (e.g. 24 pt font). Complete lack of sight is rare; most blind people perceive some light and shapes.

Myth: Blindness is stable.
Fact: Many forms of blindness lead to differences from day to day and over the course of weeks and years. Blindness varies between people and within people over time. I experience fluctuations I affectionally referred to as “bad vision days.” My cause of vision loss is degenerative, which means it continues to change over time. Even within a day, my degree of functional vision changes dramatically. I hear this facet of blindness is hard for sighted people to understand sometimes. I like to describe it as more intense experiences of typical visual fluctuations. For example, most sighted people will have a difficult time seeing upon walking into a dark room after being outside in the sun. Most sighted people will experience eyestrain after using a laptop for long hours. For me, these visual changes are far more exaggerated and longer-lasting, and generalizes to other visual experiences like glare. 

Myth: Blind people like to feel faces.
Fact: I have never met or heard of a blind person wanting to feel others’ faces. That is all.

Myth: When someone loses sight, their other senses get stronger.
Fact: When someone loses sight, they may learn ways to rely on other senses more, and reliance on other senses can lead to changes in the brain. My senses of hearing, taste, smell, and touch work the same way they did before I lost my sight. I have, however, learned to use other senses in lieu of vision. To illustrate, I use my sense of touch to determine whether a surface is clean. Using my sense of touch instead of vision does not inherently mean my sense of touch is stronger. Over time though, I have spent years relying on non-visual senses and I have now trained myself to use these senses. For instance, I have learned to listen to books and podcasts at increasing speeds, often four to five times the average listening speed. Though I have no way of confirming, I imagine this has changed my brain's wiring. 

Myth: You can tell if someone is blind.
Fact: You usually cannot tell someone is blind. Though some people use assistive tools like white canes and guide dogs, many blind people do not. A Google search indicates that only 2-8% of blind people use white canes and 5% use guide dogs. The vast majority of blind people, like myself, often navigate without a visible form of mobility assistance. It is also a myth that you can tell someone is blind by looking at their eyes. While some blind people have forms of vision loss that influence their eye movements and focus, many blind people can and will direct their gaze to where they are focusing even with very low functional vision. I have been told I appear to make eye contact most of the time, despite the reality that when I look at someone they disappear into my blindspot.

Myth: Blind people wear dark sunglasses all the time.
Fact: Some blind people wear sunglasses or tinted lenses, some do not, and others’ use varies. Because there are diverse causes of vision loss and diverse experiences of vision, some people benefit from tinted lenses. Personally, I have learned that blue light blocking glasses are really helpful for reducing eye strain. I also wear dark sunglasses outdoors and benefit from green-tinted lenses when it is cloudy. I am especially sensitive to glare and will wear sunglasses inside if the sun is shining in, otherwise I usually only wear blue-light blocking lenses indoors. Lenses come in diverse shades - amber, green, yellow - and it can be helpful to work with a low vision specialist to try out the various options.

Myth: Blind people don’t care about appearance.
Fact: Many blind people care about appearances; there are diverse preferences just as there are with sighted people. Blind people can and do care to create an aesthetic in their style and in their physical spaces. How? Many blind people have had some sight and may have visual preferences. Many also rely on sighted people for assistance. My friends and family know my preferences, often better than I do, and help me identify items that express who I am. Again, blind people come in all varieties - some like doing their make-up, some like decorating their homes, some take immense pleasure in fashion. 

A key thread across many of these myths pervades across culture and identity, there is diversity in lived experiences, preferences, and expressions. Some blind people are obsessed with interior design. Some blind people use a cane. Some blind people wear tinted glasses. Not all blind people cannot see anything. And frankly, no blind people go around touching people's faces. A step towards mitigating bias and discrimination is creating empathy through understanding. Did this answer questions you had about blindness? Would you like to learn more? If there are other myths you’re curious about, please feel free to leave a comment or email. Admittedly, I find the longer I’m blind, the less I recall my preconceptions of blindness, and I may be missing key assumptions!

Monday, June 1, 2020

Black Lives Matter

Our country has failed to take action to protect American lives yet again. The global pandemic has disproportionately impacted black and brown communities, and as the country begins reopening, we have witnessed even more truly horrific and senseless murders and violence against black lives. Like many, I feel small and incapable of change. I have hesitated to write this, or post on social media, feeling overwhelmed by the enormity of the systemic injustices contributing to these issues. I have questioned, who am I to say something? What would saying something do anyway? It is the longstanding silence and inaction that lets this continue. Even though it is difficult,  I have to use my voice and my privilege. This blog may not be the ideal forum, but I have to say something somewhere.

As I walked my dog after the Oakland curfew last night, I felt terror about the police and violence around me. I very quickly checked my privilege – I am a young white woman walking a white fluffy dog. I am not going to be a target. My heart broke upon the repeated realization that black and brown people are targets in ways I never have to feel, and it is a sign of my extraordinary privilege that I only fleetingly feel fear of the police. Especially after seeing the video of the woman in Central Park who weaponized race to target an innocent black man, I recognize inherently that I am part of the problem. My ancestors created this system. I am committed to doing the work to be part of reconciliation and progress.

I feel sadness, anger, grief, guilt, and outrage. I’m tired and overwhelmed and emotionally drained. I also recognize that my privilege shields me from so much of the pain and suffering black and brown communities feel, where there is more hurt, more desperation, more exhaustion. I see how devastating it is for our president to value things over lives; how hurtful it is for the media to criticize methods of protest; how scary it is not to be protected by the police; but instead to be targeted. I can only imagine the hurt that I do not see, that my privilege continues to protect me from.

Although I couldn’t possibly write this without briefly gesturing to the pervasive and chronic suffering people of color experience, I know that it is not my place to claim others’ pain. Instead, I hope to listen and learn, as well as share my perspective of identifying and claiming my white privilege. I can do better; I can be better.

How?

First, I’m listening to black and brown voices and learning to check my biases and assumptions. Because it is not the responsibility of my black friends and colleagues to educate me, I’m reading books, listening to podcasts, and watching documentaries. I’m humbly and nondefensively welcoming ideas on how I can become more self-aware and improve. I’m informing myself on how to best be an ally and an advocate. Some books that I have appreciated include:
Part of listening and learning means holding up nuance. This means appreciating that my truth is not the only truth. This means celebrating progress made and simultaneously shouting that it isn’t good enough. This means condemning police brutality and demanding police accountability while promoting positive examples of community policing. This means sharing diverse and complex stories of people of color, stories of suffering, and of thriving and of frivolity.

Second, I’m taking action to support. As a white person, I’ve found it helpful to pull from resources like these to identify actions like supporting black-owned businesses, boycotting companies notorious for exploiting prison labor, and increasing representation of diverse voices. I’m just getting started and am on the lookout for more ways to get involved, and wanted to share some of these resources for those interested:

Third, I’m giving what I can. As a graduate student, I can’t offer a lot financially, but there are so many organizations doing excellent work that could use additional support. Here are just a few: #blacklivesmatter,  National Council for Incarcerated and Formerly Incarcerated Women and Girls, NAACPSouthern Poverty Law CenterUnited Negro College FundBlack Youth Project 100Color of ChangeThe Sentencing ProjectFamilies against Mandatory MinimumsA New Way of Life, and Dream Defenders.

And finally, I’m using my voice. Although I’m listening and learning first, I also want to use my privilege to call attention to what is happening and amplify black and brown voices.  I can use my voice to advocate for change. I also hope to model speaking out, doing the work, and learning from my mistakes. To the black and brown communities who have suffered so greatly, the least I can do is speak up and say I see you, your life matters, and I am with you.