Monday, March 5, 2018

What is the worst part of having low vision?

A few weeks back, I was introduced to a fellow graduate student experiencing progressive vision loss. We connected in a familiar unfamiliar way: the intimacy of strangers with shared experience. After obligatory icebreaking conversation about our research interests, professional pursuits, and hobbies outside of academia, we dived deep into discussing our experiences of vision loss.

The conversation turned to the question, “what is the worst part of having low vision?” She answered first, explaining that independent navigation has been the most challenging. Despite advances in public transportation accessibility, in ride sharing services like Uber and Lyft, apps that provide turn by turn walking directions, it’s still much harder to get around independently as a blind or low vision person.

She then asked for my answer. “All the social stuff. Faux pas and isolation.”

Pleasantries and humor begot intimacy. We laughed about embarrassing stories of spilling and tripping and miscommunicating and misunderstanding. We both had an arsenal of humorous stories about walking up to strangers thinking they were our friends, and our friends thinking they were strangers.

The vulnerability under the humor was palpable. We shared the discomfort in transitioning from socially skilled to painfully awkward. We described moments when we realized we were different, and we knew we were being judged by those around us.

I confided, “and I want to scream that I’m not awkward or insensitive! I just can’t see!”

She challenged me, “the thing is, if we behave in a way that is awkward and insensitive, even if it is because of low vision, others perceive it just the same. It’s as if loosing my vision has made me awkward and insensitive. And there’s nothing to be done about it. Because others’ perceptions of us define us. It’s self-fulfilling.”

As we sat in the heaviness of that observation, I was flooded with concern over how differently others’ perception of me is from my own perception of myself. When I initially shared that the social stuff is the hardest part of vision loss, I hadn’t extended that to the characterization of my identity. I always viewed myself as socially skilled but trapped in a body forcing my social awkwardness. But, my body is me. I’m not trapped: this is who I am.

As our conversation transitioned back to levity, commiserating about the typical woes of graduate student life, these ideas stayed with me

Others’ perceptions of us shape us, but do not define us. Indeed, I may be more socially awkward now. But I am not defined by all the beliefs others have about me. Some people believe I am less capable, less deserving, or less worthy. Most days I know these beliefs are unequivocally untrue. But it would be dishonest not to acknowledge that some days, I doubt myself, wondering if there is a kernel of truth to these beliefs. 

Now my answer to "what is the worst part of having low vision?" has changed. It's still a type of "social stuff," but it's more fundamental to my identity. The hardest part of my vision loss is the changes in others’ perception of me - my social skills, my competence, my capabilities - because others' perceptions have the power to make me question myself.

Wednesday, February 7, 2018

Checking My Privilege, Carrying On

I recently watched Dave Chappelle‘s Netflix special, Equanimity, in which Chappelle responds to criticisms of his jokes against transgender people. Admittedly, I was one of the many who took incredible offense to these jokes.  In his response, Chappelle comments that there is a privilege to even caring about the feelings of people who are trans. He suggests that these jokes wouldn’t cause uproar if transgender identity was limited to blacks, Hispanics or women. His contention being that, historically, no one has defended these groups when comedians make jokes about them. But, when the issue affects those of power and privilege, namely white men, the issue becomes important.

I still take issue with Chappelle’s remarks about transgender identity, and yet, his contention about the role of privilege in civil rights advocacy stuck with me. I write about my encounters with adversity, despite the ways in which my whiteness, cis-gendered female identity, education, heterosexuality, and class have facilitated my use of my voice. This blog is the product of privilege. I have privilege in my ability status. The development of my disability in my late teenage years provided me the opportunities of an able-bodied childhood.  I attended mainstream public schools and played on local sports teams. I have privileges of education and access to an elite culture; I listen to NPR and shop at Whole Foods). I am steeped in a culture that prioritizes authenticity. This cultural privilege forms the foundation for me to speak my truth and expect others to listen.

Beyond an immediate recognition of how my privilege affords me the opportunity to share my story, I reacted to Chappelle’s response to the uproar about his transgender jokes by thinking, “who am I to vocalize thoughts about adversity? I haven’t had to overcome much of anything compared with most people. Isn’t it a privilege that I think others should hear my plight, albeit minimal, and take action?”

I considered silencing my story; we need space for the voices of those who have really had to overcome. We don’t need another educated white girl pontificating about her struggles.

But then, I reflected on my observations of effective civil rights advocacy.  The most profound example of a civil rights shift in my lifetime has related to the rapid expansion of gay rights. Within twenty years, homosexuality went from being a diagnosable mental illness to being celebrated in the media (Modern Family or the L-word, anyone?). For this change to take place, LGBTQ people had to tell their stories.

These stories were heard. People listened to the stories of their friends, family, and neighbors all sharing about their experiences. Importantly, people with sufficient privilege and power to make changes heard these stories.  When privileged white (gay) men were beaten and killed, or prohibited from marriage rituals, people with power cared.

I close by acknowledging the inherent privilege that leads me to write this blog and use my voice to share about disability rights. I could keep quiet, knowing that my struggles pale compared with so many others. But instead, I don’t think representation of people with disabilities will change without more people using their voices to share their stories. To use Chappellian logic, perhaps it is my privilege that serves as a vehicle for my advocacy.

Friday, January 19, 2018

Buzzfeed Covers Technology for the Blind and Visually Impaired

My dear friend introduced me to a well-done Buzzfeed video displaying assistive technology for those with vision loss. I'm posting here because I'm so commonly asked how I "listen to" text messages or use audio description in movies. Click here to see the clip!

P.S. I've been a bit quieter on here lately, but I have several longer pieces in the works and will be aiming for at least once a month posts for 2018. Subscribe if you want to stay in the loop!

Saturday, December 16, 2017

Superfest: A Paradigm of Inclusion

A few weeks ago, I attended the longest standing international disability film festival, Superfest. I could fill pages gushing about the films’ portrayal of disability as nuanced, complex, and diverse. In lieu of film reviews, I want to commend an excellent example of accessibility.

The event was held at The Magnes Collection of Art and Life in Berkeley on Saturday and The Contemporary Jewish Museum in San Francisco on Sunday. Across both venues, audio description, captioning, and ASL were provided without any need to make special request. They also provided audience-integrated wheelchair seating, close-up seating for people with low vision, a chemical free/scent free area, a quiet space, and gender-neutral restrooms.  And it goes without saying service animals were welcomed, with dozens of dogs in attendance. Plus, there was a separate contact if additional accommodations were needed.

That’s not all (insert cheesy car salesman grin). If you were interested in a tour, guided tours are available with ASL and audio descriptions for the blind. It may sound unsustainable, impractical, or out of this world. Why would a venue include so many different accommodations automatically?

Providing accommodations took the pressure off audience members with differing levels of ability. I wasn’t worried about being able to fully experience the event. I didn’t feel the need to contact anyone in advance. I wasn’t concerned about my ability to access the space. I didn’t fear feeling left out, excluded, incapable, or like an afterthought. I knew all would be able to participate.

It was a remarkable example of what accommodations can look like.

Tuesday, October 24, 2017

Unseen Costs of Disability

I’ve been listening to several podcasts featuring disability (shout out to Jasmine for starting me on this quest by recommending This American Life, Episode 629: Expect Delays). Although I want to highlight and thank each and every episode that tastefully and thoughtfully addresses ableism, I’ll abstain from a lengthy playlist and instead will highlight a theme that has resonated with me lately. 

To quote Carrie Wade on Bad with Money, Episode 5: Close to Normal, “When you say what’s the cost of being disabled…. It’s not all just money; it’s also time. Being disabled takes so much time. Because it takes you longer to do anything Whether it’s alone or with help or somewhere in between. You’re going to need the time to do that. And then you’re probably going to be really tired at the end of your day, so you’ll probably need to go to bed earlier than other people and that cuts off some hours. There’s also the time you spend explaining to able bodied people why they need to ‘Shut the fuck up!’”

I identify with this unspoken cost of disability. It’s hard to explain or quantify. I see myself in each of Carrie’s examples: the direct loss of time by being in an able-bodied world, the indirect, often unseen downstream effects on time, and the emotional labor in social contexts.

Practically, having a disability makes specific tasks take longer. For me, low vision makes paperwork painstakingly time-consuming. This weekend, I had to sign and mail a few items. It took me hours to complete the task. I am pretty confident most able-bodied people would do it in less than fifteen minutes. And even when I rely on others for help with paperwork, I still have to dictate information or provide signatures. No matter how I accommodate, many activities will simply always take longer.

I further share the frustration at time lost due to the indirect effects of the disability. For many, this is fatigue. For me, it’s excruciating eyestrain headaches (ahem, eyestrain migraines). They are most common on days I have to fill out paperwork. I’ve learned over the years how to best avoid these headaches (bless text-to-speech and voiceover), but they’re not avoidable. I reflect on countless nights in college when my best friend, Lena, read aloud my textbooks while I rested with a cool rag over my eyes and forehead (yes, she is one of the most amazing humans). I treasure this particular memory, and yet, most of my lost nights are painful, lonely, and discouraging.

Despite my pride in using my voice to educate about ableism, it’s tiring. Asking for help is tiring. Explaining my needs is tiring. Many people from underrepresented groups experience time wasted by explaining, and re-explaining: gender identity and pronouns, sexual orientation, religious beliefs, cultural identity, family of origin, race, and more. Don’t get me wrong, I would rather answer questions and clarify misconceptions than enable ignorance. I know it is in my best interest to assert my needs. And at the same time, doing so can be exhausting.

I share these unseen costs of disability cathartically and indulgently. In addition to venting, I hope to illustrate the effects of disability often extend beyond the disability; some of the most profound costs are social and financial. Frankly, my greatest challenges being disabled have little to do with being physically unable to see.

Note: The episode of Bad with Money cited is focused on displaying the extensive financial challenges faced by people with disabilities. The episode covers SSI/disability benefits, paratransit, medical visits and procedures, etc. Time is simply one small piece that contributes to the financial burdens experienced by those with disabilities, and it is worth checking out the episode for more!