My Christmas Mission to Educate

As in years past, my Christmas day was spent with family, sitting around the fire wearing reindeer-printed sweaters, drinking mimosas, and occasionally attending to a special on TV. While catching a glimpse of some program, I was presented with an opportunity to educate on ableism. Normally, I would bite my tongue, sip my drink, and wait to rant about it with friends later. On this Christmas day, I decided it was imperative not to miss the valuable opportunity to spread awareness.

In response to a segment on a woman’s experiences with Down syndrome, my mom stated, “how absolutely horrible to be a downs.” My mom had no intention of causing offense. She meant to express gratitude for our family’s privilege. Nonetheless, I was triggered and felt the need to hop on my soapbox.

My first response related to biased language. I explained the difference between her phrasing, which defines a person as a “downs” - and using person-first language that includes the disorder as something the person experiences (rather than as their entire identity). I emphasized that a person has many identities, including disability status, and categorizing a person with a label, like saying someone is a “downs,” can be interpreted as offensive and limiting. I offered alternatives such as saying someone has been diagnosed with Down syndrome or experiences Down syndrome.

Then, I explained why I found the phrasing "how absolutely horrible" judgmental. It is undeniable that Down syndrome can make life more challenging. At the same time, we all encounter adversity that makes life more challenging. For some, it’s being bad at math; for me, it’s having low vision. Regardless of the challenge, it’s not ideal, and it’s also not unequivocally unsurmountable. For something like being bad at math, we envision a fulfilling life despite that challenge. We would never presuppose that life is "absolutely horrible" because of that challenge. Down syndrome is simply another form of challenge, one that does not preclude happiness, wellness, or success. In other words, I find it presumptuous and inaccurate to believe life would be "absolutely horrible" if it included a specific challenge, in this case Down syndrome. 

Although Christmas may not seem like the prime time to educate about ableism and identity, I stand by my decision to share my perspective.

An Acrobat and a Challenge Against Ableism

He used the strength of his arms to propel his body into the air, balancing on his crutches, thrusting his torso and leg over head. He switched from one crutch to the other, elegantly twisting back to standing. He twirled his crutches proudly, using them as props in his acts. Much like the other performers on stage, he masterfully commanded his body, isolating and contorting his muscles. This was the first time in my life I have seen someone physically disabled featured in an acrobatic performance. Actually, it’s the first time I’ve seen someone visibly physically disabled in any “mainstream” athletic, theatrical, or musical performance.  I watched this man, feeling inspired and grateful, at one of the Cirque Du Soleil shows in Las Vegas.

This man displayed that people with disabilities may perform differently, and it is often in this difference that incredible talent emerges. He could not dance the way the able-bodied dance. He could not walk the way the able-bodied walk. Yet, he moved his body in ways that the able-bodied cannot. The strength of his arms enabled him to position his body in various inversions. His familiarity and comfort with his crutches enabled him to use them as extensions of his arms, on which he balanced as if he were a gymnast suspended in the air on rings. It was because of - not despite of - his disability that he elevated his artistic medium with innovation.

I highlight this experience with no intention of subjecting this man to “inspiration porn.” It is incredible what he has accomplished, as it is incredible what the other performers on stage have accomplished. Instead, I hope to highlight the equity and inclusion demonstrated by Cirque du Soleil in featuring this talented performer. The choreographers of the show undoubtedly modified routines to best suit his needs and strengths. I applaud the flexibility and courage demonstrated by the many who facilitated his artful participation. 

It is obvious that people with disabilities are forced to navigate the world differently. The challenge arises when others assume navigating the world differently accompanies more difficulty and less enjoyment. I have been asked how I adore shows like Cirque du Soleil. “Can you see well enough to really appreciate it?” The question assumes that if I am unable to see, I am unable to experience. Although I certainly see less, this does not mean I experience with less enjoyment. I can, and do, value art, theater, and athletic performances. I do so with all my senses, which happens to mean with less visual acuity. Doing things differently does not mean enjoying them – or experiencing them – any less.

Likewise, this performer was an equal part of the performance, dancing and contorting differently, but no less gracefully. This man was both part of the larger dance numbers and highlighted in solo acts. He was a member of the cast like any other. His integration in the performance reveals that the disabled can and do fulfill the demands of challenging fields.

Seeing this strong, talented, artistic performer with a disability displays that it is possible to have a profession as an acrobat and a dancer and have one leg.  Given the dearth of role models with disabilities across professions, I watched this performance with a full heart.  It is rare to see people with disabilities in esteemed positions. It is rare to see people with disabilities in performances. Thank you, Cirque du Soleil, for challenging these cultural and social norms of ableism.

Bad Vision Days

            Yesterday was a bad vision day. One of the major misconceptions about disability and chronic illness is that the daily experience is consistent. Just like symptoms of depression or Crohn’s fluctuate, as does my vision. Within a single day, my vision predictably varies based on lighting and fatigue. With a progressive disease, my vision gradually declines over the years. A less obvious and less predictable feature of my vision is that there are good days and bad days. On bad vision days, for whatever reason, I see worse.

            In one of my classes, the professor requested we break up into small groups to conduct miniature meta-analyses. He provided tables from which we were to obtain the necessary statistical values. This table – a relic from a paper published in the 1980’s – was pixelated and blurred, even to the sighted. As I tried to enlarge and convert the text to speech, it became apparent that this document was not accessible in any way. Whether I was having a bad vision day or not, I doubt I would have been able to read the minuscule (size 8?) font. I cowered over my computer, holding my face a mere inch from the screen. I made jokes to my fellow group members - a common defense of mine. Nonetheless, my self-doubt and frustration was mounting. With my eyes vacillating in and out of focus, I could tell I was in for visual strain for the remainder of the day.

Following class, I walked into my lab space and asked the question, “has anyone seen where K ran off to?” Unbeknownst to me, I was looking directly at her. She responded, “who, me?” and I awkwardly explained “the lighting in here – the backlit window with everyone’s dark silhouettes! Sorry, blindy fail. Yes you!” I surprised myself; normally I find I can recognize familiar faces from this mere 8-foot distance: not today.

I was seeking help from K because I was having difficulty troubleshooting some errors in a computerized experimental task. Being honest, my difficulty resulted from navigating a computer with lackluster accommodations. Nonetheless, K came to the rescue, quickly tweaking my code and clicking between windows, between programs. I passively stared at the screen, not disclosing that what I perceived was a fuzzy gray blur. I feigned interest and intrigue. After K fixed the bugs, I tried running through the task a handful of times. One of many challenges I encounter programming computer tasks is that my pilot testing is cursory. I cannot actually do the task or determine if my data is collected correctly.  Following a few feeble attempts, I again asked to “borrow a pair of eyes.”

My final obligation of the day was a team lab meeting. While discussing a potential novel approach for data collection, the primary investigator (lead of the research) glanced at me asking why I was nodding. I of course had no idea she was talking to me. I awkwardly looked left to right, and mumbled “uh me?” This was followed by what I can only imagine was a look of confusion - of course, I couldn’t actually see the expression. I then fumbled through an explanation of my thinking.

The awkwardness emerging from turn taking repeated over the course of the meeting. At one point, I wanted to share my thoughts on a study design. We are a small enough group; we often opt out of hand raising in favor of a casual group discussion. Although both present challenges to those with low vision, in this case I repeatedly inadvertently began talking over the primary investigator and other team members. My self-consciousness got the better of me. The embarrassment shut me up; I kept my comments to myself for the remainder of the meeting.

            Walking from campus in the dark of night, I had my hands full with a jacket in one hand, my phone and keys in another. Rather than shoving my belongings into my bag to free up a hand to use my cane, I decided it was a short walk, mostly well lit. I hadn’t fully pieced together the theme that I was having a bad vision day. I tripped down the stairs. I accidentally weaved on and off the sidewalk, having a hard time recognizing where the cement ended and the grass began. I used my hand to guide around a concrete wall. I walked slowly – well slowly for me – and approached the train station.

            Upon arrival at the train station, I was greeted by two of my lab mates. I hadn’t seen them. I let them lead the way – to the train, on the train, transferring trains. I wonder if they realized I was doing this strategically. Normally it is seen as a gesture of chivalry to urge another to take the lead. For me, it is a gesture of desperation. I needed them to guide me.

            When I got home, the burden of my bad vision day hit in full force. I was debilitated by an eyestrain headache. As an absurdly busy aspiring academic, eyestrain headaches are often one of my chief complaints. When they hit, the pain is overpowering; I cannot do anything but rest my eyes. This means no more writing papers or reading articles or typing progress notes. This means I have to listen to my body and accept that sometimes, I cannot keep up my juggling act, in which I balance teaching, clinical work, research, and my interests in fitness and writing. It is often in these dark times – literally, as I rest with a cool rag covering my closed eyes – I question my abilities to persist.

            A few months ago, a fellow member of the low vision community said to me that the limitations of our vision are self-imposed. He spoke to the idea that we limit ourselves, and that our shame and self-stigma holds us back more than our vision ever will.  I hate my bad vision days, and feel physically constrained by the limitations in my vision. And yet, the worst part of my bad vision days is not my vision at all; it is self-doubt. Bad vision days lend themselves to self-criticism and pessimism.  This morning, after recuperating, I was reminded and relieved that like all bad days, bad vision days end.

Another's Beautiful Story of Partial Blindness

Today, I share and highlight a wonderful piece in The Guardian in which Annalisa D'Innella shares her story of partial vision.

"In order for guide canes and symbol canes to be effective, they need to be understood. Somehow, some time ago, the people who came up with these valuable low-vision solutions only did half the job. They didn’t put the resources needed into raising public awareness and, as a result, the cane has become symbolically too blunt an instrument."

I appreciated this post because D'Innella speaks to the unique experience of being partially sighted. Like D'Innella, I selectively use my assistive devices, including long white canes and my service dog. D'Innella sends a strong and empowering message by confidently navigating the world as she sees fit (yep, pun intended). I am still learning to embrace partial sightedness; depending on my company and context, I often continue to feel self-conscious when I use my cane, even when doing so is assistive.

"Blindness is not binary. It is a rich and fascinating spectrum. Visually impaired people come in many different variations. Some of us have central vision but no periphery. Some have periphery but no central. Some see the world through a window stained with blobs. For others, it is all a blur. We could form a zombie army. But we will probably just quietly get in your way on staircases."

Blindness deserves demystifying. The experiences of people with low vision and blindness are vast and magnificent. For each person, we see and are seen differently. I hope through this and other blogs, advocacy, and open dialog that I can share my story and perspective on blindness. Thank you, Annalisa D'Innella, for sharing yours.

United We Stand, Divided We Fall

With strong divisions in America – red and blue, rich and poor, white and colored– many would describe America as broken, incapable, and ineffective. These deep divides led to an excruciatingly painful election, and undoubtably more pain to come. Donald Trump successfully capitalized on these fractures; exemplified by the title of his book, Crippled America.

His book is not about serving persons with disabilities. Instead, Crippled America was written by Donald Trump to defend his positions on issues ranging immigration, the Iraq war, and the media. The irony is that Trump is the only candidate from the primaries who didn’t offer a position on disability rights. In total, I’ve observed two instances in which Trump has made overt mention of disability: (1) Using this politically incorrect and offensive term, “crippled,” to describe how “broken” America is, and (2) flagrantly mocking a reporter for “using his disability to grandstand.” The first example reflects ignorance and poor taste. The second reflects insensitivity, presumptuousness, and intolerance, all of which makes my skin prickle with fear. The only other public statements Trump has made are peripheral, stating that he aims to reduce the overuse of social security and disability. This stance undermines the authentic need for services. And this is what we know about Donald Trump and his perspective on persons with disabilities.

We all have reason to be afraid. So many of you, my friends, loved ones, and allies, have shared how unsafe you feel in the aftermath of the election. With you and for you, I hurt. I, too, feel afraid, disappointed, frustrated, concerned,, and ashamed.  

Donald Trump has harassed nearly every marginalized population in the country.  As a woman, I feel the glass ceiling has been bolstered and my reproductive rights are in jeopardy. As a person with a disability, I feel uncertain how this country will view me and if my government will continue to mandate accessibility. I acknowledge my privilege, as these fears pale in comparison to those fearful for their lives, their rights to stay in this country, their rights to marry. We need to support one another, and have genuine conversations about how to mobilize to ensure that the civil rights and liberties of all Americans are protected. We need to speak up when we hear hate.

These last two days have been somber, difficult, and dumbfounding. I have had a hard time processing, and have found it challenging to tear myself away from the media. I hesitated to articulate my profound sadness and outrage; I’ve lacked the words for my grief or the distance to maintain respect for “the other side.” I am striving to open my heart and open my mind. This openness does not preclude my rejection of hatred. I will protest and use my voice to be an advocate for inclusion.  And, I will also hear the strong and inspiring words of Hilary Clinton and Barack Obama when they remind us to unite. Uniting means seeing one another, supporting one another, defending one another.  Uniting means fighting, together.