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A week ago Sunday, the day before the Boston Marathon, I attended the local half-marathon in support of my family. After the race, I joked that it was good knowing I have family members who can run 13 miles. If an apocalypse were ever to happen, someone would be able to run for help or to get food. (I think of everything in terms of an apocalypse: how to stay in contact with people, how to get food, what would happen if I couldn’t get my meds, etc.)

Personally, I’ve never had an interest in participating in a marathon and I’ve never understood why someone would want to. I could understand the personal challenge, the competitive aspect of finishing the race within a certain amount of time or with a time better than a previous race, beating the majority of runners in a specific age or gender group. I think what I didn’t get was the intrinsic value of completing a race like this. For example, what’s the payoff for those who participate in marathons for a cause (other than financial) or after a personal crisis? As someone with lupus, I am familiar with the Lupus Run/Walk and support bringing about greater awareness of the disease, but how exactly would it help me or advance lupus research? The truth is, until recently, I didn’t think about marathons too much. And then I had the opportunity to watch people as they ended their race, some finishing alone, or in pairs, as a group, and even couples pushing their small child in a stroller.

I was able to get a spot near the finish line, close enough that if I had reached out my hand I could have touched some of the runners. I wasn’t sure what to expect. It took me a minute to gather myself, overwhelmed (as I tend to get) among a crowd of people, a little disconcerted by the cheering and the announcer calling out the names of runners as they crossed the finish line. (I heard the names of two of my doctors over the speakers. Can’t get away from them. Ever.) Eventually, I found myself focused on the faces of runners as they came down the “chute” and passed us by.

As with most blog posts and unlike the fiction I write, I don’t know where I’m going with all this. Maybe I’m fumbling to explain moments that didn’t happen or that only existed because I had some great expectation of the people who managed to run 13 miles. Maybe I was looking for a transformation or an epiphany. I know I’m still not planning to run a marathon, but maybe I understand the appeal of such an experience just a little bit better. What follows is my feeble attempt to grasp the connections between us.

So: I watched the faces of the runners, assuming there would be a lot of gasping and pained expressions — and I did see some of that. But I also saw something else, some change to their countenance. I could say the look was one of exaltation, yet that description isn’t quite accurate. What I saw felt intensely personal, an internal human experience rising to the surface. I teared up a little, caught off-guard, uncomfortable with what was happening on the faces of these strangers. It’s impossible to describe what I saw in a straightforward manner when what I saw wasn’t anything direct or recognizable. And yet it was palpable. More than simple joy or pride or even a combination of feelings, it was like I had looked into an actual living soul — or whatever it is that sparks our emotions and ideas and combines with suffering and pleasure. I had no way to understand or prepare myself for that. In fact, I felt as though I were seeing something I shouldn’t and I almost wish I hadn’t; but I think I needed that, to remember that there is so much more to all of us.

If I had spoken to each of those runners, would they have been able to describe what it was I saw? What it meant? Beyond a sense of accomplishment or physical discomfort or relief that it was all over, what did they experience? Would they have recognized or recalled this beautiful, mysterious, vulnerable moment in themselves? I’m not sure they would have.

Last Monday, after learning of the horrible attack on the people attending and participating in the Boston Marathon, I could think only of those faces.

Later in the week, I thought about the two suspects, as well as the self-appointed internet vigilantes, and the lives they hurt in the name of vengeance and justice and God and Reddit. I wonder whose faces they saw, if they even bothered to look beyond their own petty ideas and self-righteousness to see human beings and human experiences individually and collectively, to see beyond their need for violent actions and false claims. I think they only saw faces, if that, and nothing more as they sought out people to blame and punish.

Today, I’d want to ask this question of the surviving brother, the lone suspect: What did you feel other than your hate? What did you see other than yourself and what you thought you deserved? And why did you think murder was the right response? The world has seen your face and we agree it’s a sad and cowardly one. For now, we can see nothing beyond that.

Blog Spotlight: Disability and Representation, Changing the Cultural Conversation

I first heard about Rachel Cohen-Rottenberg’s site via writer Rachel Swirsky. Of course, just seeing the title of Cohen-Rotternberg’s blog struck my interest. With a Master’s Degree in English and currently working on a second degree in History and Culture with a focus on Disability Studies, Cohen-Rottenberg explores, as stated in the title of her blog, the representation of disability in our culture. She digs deep into our understanding of disability, reveals misconceptions and the general lack of knowledge about its history. For example, in her essay Where Are the Elders with Autism? Reflections Upon Reading Fred Pelka’s What We Have Done, she discusses the institutionalization of disabled people, an issue that has affected her family and a period in our history which has mostly been forgotten.

I have a personal interest in this subject: my great-aunt Sarah, who was autistic and had cerebral palsy, was incarcerated in Massachusetts state institutions for most of her short life and died of tuberculosis in the Foxborough State Hospital in 1934, at the age of 25…. I am always shocked, then, to hear people say that autism is an entirely new condition that didn’t exist in past generations. When I hear such things, I feel as though my great-aunt has been relegated to obscurity a second time.

She goes on to challenge Anne Dachel, an editor for Age of Autism, as “[One] of the people who has been most vocal about the purported impossibility of autistic people existing in large numbers before the current generation…” Dachel “believes autism to be a recent ‘epidemic’ caused by vaccination” because she can’t find middle-aged or elderly people in nursing homes who suffer what is considered severe autism.

Cohen-Rottenberg’s response:

Of course, the idea that someone could go to a nursing home as an elder implies that the person was once a part of a community. It is ironic, then, that Ms. Dachel is looking for people born between 1930 and 1975 — years in which disabled people, far from being integrated into their communities, were ruthlessly segregated from society, denied the right to an education, and consigned to a “disability gulag,” where they underwent enormous suffering, deprivation, and abuse (Pelka 2012, 49).

Another essay of Cohen-Rottenberg’s, which delighted me and spoke to a truth that I had felt and experienced but could never quite describe, is When Inspiration Porn is Counter-Inspirational. This was the first time I heard the most accurate expression “Inspiration Porn.”

For those unfamiliar with the genre, inspiration porn consists of the objectification of disabled bodies for the purpose of inspiring able-bodied people. Disabled people are its subject matter, but able-bodied people are its audience. And what should able-bodied people be inspired to do, you ask? It’s simple: they should adjust their attitudes, quit complaining, and go on to achieve great things through hard work and willpower. Of course, the ideology of inspiration porn completely ignores the bigotry, the economic injustice, and the basic human limitations that keep most people from actually being able to do all of those things.

An example I found using the search term “Inspiration” on Facebook:

This is inspiration porn objectifying those with disabilities.

It’s not often that you find such an educated and rational discussion of the way disability is treated and portrayed. Rachel Cohen-Rottenberg’s writing is evocative, provocative, honest, and engaging and there’s always a bit of humor woven into her essays. Although I’m not “officially” disabled, I have to say that her blog posts have helped me understand my own limitations and provided me with a way to discuss the subtle and not so subtle prejudices of those who don’t understand the stigma, implications, and history of what is considered a disability.

Blog Spotlight: I Quit My Job and Moved to Guam

I might be a little biased, but I think anyone who reads my sister’s blog will find themselves entertained and inspired. Over a year ago, Antonia really did quit her job and, along with her boyfriend, made the move to Guam. Since then, she’s had to adjust to island life — a new way of living for someone who’s spent most of her time in Eastern Oregon and Idaho. She’s also had the opportunity during her time in Guam to travel to Japan and the Philippines. And I’m sure she’s not stopping there.

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Part adventure journal, part guide for folks potentially moving to Guam, she covers a variety of topics, from discovering great hiking trails and exotic wildlife to the problems of dumping and littering and the high cost of living on an island. Each post contains beautiful, fun, and thoughtful photos to accompany her essays. If you enjoy good travel writing, want to learn about Guam, or just want to see photos of a lovely young woman living it up on the island, follow Antonia’s excursions at I Quit My Job and Moved to Guam.

Love you, Tonia!

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