Paul K. Longmore Institute on Disability - cross-post

In My Mother's Eyes, and Mine

Visitor — Wed, 09 May 2018 21:42:20 +0000

The following blog is cross-posted from an Opinion piece by Catherine Kudlick, which was part of: The New York Times weekly Disability series

Credit: Elisa Talentino

I was blindfolded. My legs dangled off a chairlift high above the Colorado ski slope. I nervously licked at little bits of snow that tickled my lips. I was 43, and this was my first time downhill skiing. Whenever the contraption shuddered and bumped, I was convinced that we had become unhitched from the cable and were about to plunge to our deaths.

But assuming my experienced guide was right and we survived the ascent, what then? What should I do with the poles at the top? What if my skis got tangled up? What if the chair knocked me unconscious after I’d dismounted? And how would I explain this to my mother? I recalled the day not long before when I first broached the topic of my coming training at the Colorado Center for the Blind in Littleton. Hoping to appeal to her adventurous and quirky side, I explained that the program was a bit like Outward Bound. For those who had even slight partial vision, as I do, it involved wearing sleep shades as you did activities — including skiing — that most people assumed could be done only by the sighted. Mom agreed that this training would help my research on the history of blind people. As a social worker who had been active in the League of Women Voters studying inequalities in the juvenile justice system, she approved of my scholarship on marginalized groups.

But accepting that her daughter belonged to one of those groups was another matter.

After all these years, the idea that I might be blind enough to benefit from the program didn’t seem to register. I was born two months premature and totally blind with cataracts. Then several months later, I startled when my dad used his new camera flash to take a picture of me nestled in a butterfly chair. This wasn’t supposed to happen. Realizing that my eyes might actually be functioning, my parents whisked me off for the first of what would be a series of operations that would punctuate my life, initially giving me sight, then improving it, then saving it when it almost disappeared, and later improving it again. These procedures ultimately allowed me to see about 10 percent of what fully sighted people do. Thrilled that I wasn’t completely blind, I grew up as a profoundly visual person who believed in medical miracles. Each surgery brought some new discovery — the flicker of a candle, shiny wrapping paper, our silky black cat asleep on the golden chair. Everything I could see excited me and still does.

But while most people fear blindness because they perceive it as being lost in the dark, I associated it with being thrust into the spotlight.

It was easy to pretend that I had decent vision until the taunting began in elementary school. My cataracts left me wearing thick bifocal glasses and with a condition called nystagmus, rapid muscle movements that make my wandering eyes carry on a rich life of their own. The more I try to hold them still, the more they move. When I was a kid, a doctor explained that my eyes were “always looking for something better to see.” For me, it wasn’t always so poetic. One of the many operations I had as a young adult required the surgeon to carve out a larger hole in both pupils, with the painful consequence that my eyes are permanently dilated, and thus extremely sensitive to light. I have trouble walking outside at night or in crowded, chaotic places such as airports or hotels. When I’m tired or anxious, my visual world essentially disappears. I can use only one eye at a time, which means I lack depth perception, and I’m easily confused by shadows, brick walkways, curbs, steps and changes in floor texture. I can’t say for certain when shame obscured all the other complex feelings about my poor eyesight; I only know that unless it involved the miracle in the butterfly chair, we seldom talked about it at home. Nor did we talk about something even more taboo: my mother’s own eyes, and the idea that I inherited my vision problems from her. Mom functioned through most of her life with one poorly working eye that nobody wanted to admit was rapidly getting worse. As a child, I somehow never connected the fact that I had the only mom in all of suburbia who didn’t drive with my friends’ questions about why her eyes were different colors. Because Mom didn’t wear glasses and Dad did, I grew up believing that he was the one with eye problems. To be fair, we had many enablers to help construct a comfortable, dishonest world. Because blindness induces so much fear in everyone, friends, teachers, store clerks and even ophthalmologists colluded to turn my mother and me into people who appeared to have far better vision. At a young age, I’d memorized the seldom-changing eye chart so I could perform better on eye exams. I hadn’t set out to deceive anyone; I simply wanted to make people happy because they acted so pleased when I improved. So when I’d told her about the Colorado Center for the Blind program all these years later, she said: “But, Cath, you never needed a blind school before. You’ve even been teaching college!” Then, with concern in her voice, she asked,

“Has something changed, baby?”

I struggled to find words. Yes, things had been changing. But it wasn’t about what my eyes weren’t seeing; it was about how I was coming to see myself. After decades of pretending to be someone with decent eyesight, I was at last ready to confront this blindness that always hovered at the edges of my world. Skiing with a blindfold was just the beginning.

I’d like to say we were finally able to speak about this freely, but families being families, we never did. I wish we were able to have chided each other for allowing stigma to pull the wool over our eyes (pun intended!) for so many years. We might have bonded over how much work it takes to spend day after day pretending to see the world just like everyone else. We might have even credited our poor eyesight for giving us a fresh perspective on things that fully sighted people take for granted. Imagine swapping stories about how we coped, about absurd situations, about how we made alternative sense of the world! But, honestly, I didn’t need my mother to do this. Growing up before disability rights and with a mother who berated her for being flawed, my mom had perfected her own strategies and blazed her own trail. Surely, she faced self-doubt and pushed past both her own fears and those of others. She cultivated nonconformity and invented tools to deal with having to give up a career in New York City in order to be a good wife hauling kids and groceries on a bicycle in suburbia. In the face of such love and courage, who am I to insist she add embracing blindness to the mix? When at last my ski guide told me the chairlift had reached the top, I was surprisingly calm. I even imagined taking Mom skiing to thank her for the inner strength and audacity that led me to the top of that mountain in the first place.

Then again, she was right there, just as she has been all along.

Catherine Kudlick (right) stands with her mother (left)

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“Save Changes”: Telling Stories of Disability Protest (via Nursing Clio blog)

Visitor — Wed, 05 Apr 2017 18:06:21 +0000

This is a cross-post from the Nursing Clio blog originally posted here.

By: Catherine Kudlick

At first, it was a simple case of “if you can’t beat ‘em, join ‘em,” as I worked with WikiEducation Foundation to teach a methods course in which students created disability history content. But the more I learned, the more it became clear that we were engaging in multiple forms of protest, especially once I began working on my own contribution.

My past warnings to students not to rely on content created by the crowd were perhaps a vestige of anxieties that had led authorities to suppress Wikipedia’s precursor, L’Encyclopédie in the decades leading up to the French Revolution. Its impresario, the Enlightenment thinker Denis Diderot, had already been imprisoned for challenging established knowledge.

Diderot would have been pleased by Wikipedia’s mission, “to bring about a world in which every single human being can freely share in the sum of all knowledge,” at the same time that he would recognize its flaws. Most editors are young white men who, consciously or unconsciously, ignore those on the margins. And Wikipedia’s “notability” requirement (“significant coverage in reliable sources that are independent of the subject”) inherently favors information from establishment sources. Such rules reinforce existing ideas about which topics merit coverage.

My class faced real challenges. First there’s a daunting set of Wikipedia codes and hierarchies. And I was surprised to discover that even a generation weaned on social media fretted about public feedback from strangers.

Then there was the focus on disability history. A field that began to coalesce around 2000, it seeks to expand thinking about a group that makes up nearly one fifth of the US population today. Unfortunately, a prevailing belief that disability is a static biological condition prevents most from understanding it as something shaped by society and culture much like race, gender, class, and sexual identity. At the beginning of my disability history courses, I tell students that they’re on the cutting edge of history, much like those a generation ago who learned about women’s history and the history of African Americans.

I told this class that they were making history by writing it.

Pointing out that history has a history, I invited them to consider how putting a group in context can combat prejudice and stigma. An entry that tells the story of your people on the world’s seventh most visited website can’t help but catapult you from being an individual struggling alone to being part of something far bigger. With belonging comes a sense of pride, a sense of having something to contribute.

Learning along with my class, I wrote an article on the longest nonviolent occupation of a federal building in US history, the “Section 504 protest” in April 1977. Through an exhibit called “Patient No More: People with Disabilities Securing Civil Rights,” I’d helped bring this little-known disability Stonewall to life. The successful month-long occupation by over one hundred disabled people and their allies would pave the way for the Americans with Disabilities Act (ADA).

HEW employee Bruce Lee posted a sign, reading “504 is law now make it reality,” in his office supporting Section 504 during the protest. (Photograph by HolLynn D’Lil)

Four years before the protests, congressional staffers had slipped anti-discrimination language from the Civil Rights Act of 1964 into a vocational rehabilitation bill that was up for reauthorization. This countered views of “the disabled” as pitiful wards of charity. Rights included making public spaces accessible to people in wheelchairs and mainstream education open to qualified students with disabilities. This “Section 504” applied to nearly all public spaces, including government offices, universities, schools, hospitals, and transportation systems.

Disability activists understood 504 as their bill of rights that still needed one signature from the Secretary of the Department of Health, Education, and Welfare (HEW) in order to be put into effect. Worried about costs, officials from the Nixon, Ford, and the newly-elected Carter administrations had stalled. After four years of trying every legal channel, activists snapped. On April 5, 1977 people with disabilities took to the streets in cities with regional HEW offices. Almost everywhere protests were either cut off or fizzled.

In San Francisco things were different. With little warning, over 100 people streamed into the Federal Building and refused to leave for nearly a month.

504 protesters occupied the HEW offices at 50 United Nations Plaza, making them the headquarters of the “Section 504 Emergency Coalition.” (Photograph by HolLynn D’Lil)

The protests succeeded in part because of the Bay Area’s unique climate. Since the 1960s disabled people had been drawn to the rich mosaic of minorities who challenged the status quo: gay men and lesbians, students, artists, and practitioners of new religions, all that included people with disabilities. Decent weather made it easier to participate in antiwar protests, civil rights demonstrations, and the Free Speech Movement gathering momentum at UC Berkeley. In this electrifying environment disabled individuals came to think of themselves as people with rights, while putting them in touch with potential supporters.

The 504 occupation also succeeded because savvy organizers, including Kitty Cone, Judy Heumann, and others, had spent years cultivating relationships and building coalitions. In addition to galvanizing disabled people themselves, they had educated politicians. Mayor George Moscone helped with portable showers while Congressmen Phil Burton and George Miller had the 4th floor of the federal building declared a temporary “satellite office of congress,” a theatrical stunt that allowed them to hold a public hearing about the protesters’ concerns to garner media attention. City officials allowed hundreds of people to gather each day on Civic Center Plaza below to cheer on the occupiers.

The protest also enjoyed wide support from local community groups. In line with its popular food programs, the Black Panther Party brought in hot meals for all 100+ occupiers, including BPP members Brad Lomax and his attendant Chuck Jackson.

Protesters gathered in front of City Hall in support of the 504 occupiers. (Photograph by HolLynn D’Lil)

And the disabled people inside risked their jobs and even their lives to be there. Amidst office furniture, people from different races, social classes, and with a variety of disabilities and their allies created a makeshift society. Some were seasoned protesters while others had never slept away from home before. Spending so many hours together forged cross-disability coalitions rooted in true interdependence — such as when someone who couldn’t speak could dial a phone so that someone without use of her hands could make a call. Just like in any community, there was bickering and intrigue and romance, but here there was also a sense of purpose and a political awakening.

I teared up as I hit the “save changes” that would make this story public on Wikipedia for the first time, knowing a hard-fought victory was now part of electronic history and of course up for grabs.

But how permanent is it? Even before the November 8 election ushered in an era ever more hostile to minority rights, I sensed something like 504 would now be hard to pull off. Everyone is on guard, literally and figuratively, in a national climate of building walls rather than alliances.

I imagined my students hitting “save changes” buttons of their own. Future activism will likely be about occupying virtual spaces and other tactics we can’t yet imagine. History inspires us and the next generations to take heart that the seemingly most disenfranchised can — in the words of 504’s Kitty Cone — “wage a struggle at the highest levels of power and win.”

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