Sunday, July 26, 2020

Why Can't You Find a Polio?

On this, the 30th anniversary of the signing of the Americans With Disabilities Act (ADA), amidst current and remarkable social unrest, I wanted to take some time to reflect on our ongoing struggles with isms and Civil Rights in general.

Listening this morning to an old interview with Civil Rights icon and Congressman John Lewis (RIP), and recently watching the Netflix documentary Crip Camp, I was struck by the amazing work of our forebearers (of which I've reaped the benefits), progress made during my lifetime (between Section 504 of the 1973 Rehabilitation Act [not implemented and enforced until 1977], passage of the ADA in 1990, the election of the first African American President in 2008, and the legalization of same-sex marriage in 2015) -- as well as how far we still have to go (as exemplified by the need for the Black Lives Matter movement, the way people of East Asian descent have often been scapegoated for covid-19, and how the vulnerability of people with pre-existing conditions is sometimes blamed for inconveniencing "healthy people" during the pandemic).

Crip Camp also contains some "beautiful" examples of unconscious discrimination that jumped out -- such as a woman with Cerebral Palsy who mistakenly had gonorrhea diagnosed as appendicitis, because the doctors in the ER couldn't imagine she was sexually active -- and the reaction of that same woman's new mother-in-law to her son's choice of bride: "I understand why you'd want to marry a handicapped girl, but why can't you find a polio?". We go out of our way to build arbitrary hierarchies even within marginalized communities, I suppose to make ourselves feel better but always at the expense of someone else. When will it end? 

I'd say that at least covid-19 is an equal opportunity infector, but we know that isn't true: institutional biases toward race, class, and "health" beat the impartiality of nature every time. 

Hooray for civilization!

Saturday, April 04, 2020

Global Pandemicolon

For years (nearly ten!), the very long tagline of this blog has been: My favorite punctuation mark is the semicolon. And it's an apt metaphor for recent years of my life: it's more than a comma pause, not quite a period stop; it usually appears in the middle of a sentence; no one quite knows how to use it properly; it's a sigh of contemplation; a knowing wink; an upward glance of reflection.

Of course, the metaphor extended from discovery of my aneurysm through my stroke and ongoing "recovery". Now we all find ourselves in this odd holding pattern of anxiety over the unknown, anticipation of a return to "normalcy," the resignation and acceptance of current state as normal, adaptation to circumstances through creative thinking and assistive technology, nostalgia and mourning for the (probably overly-romanticized) memory of a life of relative ease, and grief over the loss of freedom to plan for a future beyond the confines (pun intended) of the next month or two. Why, it's almost like being in love.

So: Welcome to my world (Cue FAO Schwartz music). Much of self-distancing, isolation, and hyper vigilance mirrors the every day lives of people with disabilities, right down to battling the stigmas of "exposure" and "risk". People don't like to be reminded of their own mortality, and disability and/or disease often do that. But can we please put down the torches and pitchforks long enough to recognize that someone who coughs or even tests positive for novel Corona virus isn't a pariah? Same goes for the elderly or others perceived to be at greater risk during this crisis, as if it's their fault for making us stay inside for the past and next few weeks or months? Yes, I had a heart attack and a stroke ten years ago. But I do not have any ongoing health effects or medical conditions which place me in the high risk groups for COVID-19 infection. So don't worry about me. In fact, I'd argue I'm well equipped to weather this storm given the breadth of my virtual support system, my ability to work from home, and my tolerance for expecting the unexpected. Why, last October, when I was contemplating what this year's health crisis might be, it centered around tinnitus and ear wax (both of which have dissipated), perhaps the inconvenience of reflux (still ongoing but manageable), periodic lower back lock-ups (pretty bad over the last week), but never did I predict this. 

I had even started to allow myself the luxury of planning for 2020 and for my 50th birthday to signal a Year of Yes. Damn it, I had a lot of travel plans. Now I'm in the mode of checking cancellation policies and re-planning, though the uncertainty makes that feel hard as well. We're so in the thick of the pandemic that it's hard to imagine transcontinental travel being safe in a year, whether it's a second wave of this virus or some other global crisis that stands in the way. And who knows when I'll be able to get my Age 50 colonoscopy? The disappointment never ends.

That can be a frustrating perk of living in a semicolon: you're so prepared for the unpredictable that you're less let down when it happens. Though I'll admit I'm pretty upset that my Year of Yes has become a year of, "Not so fast, mister." Even when I consider the satisfaction of throwing caution to the wind and living to the fullest despite fate's insistence otherwise, I have to check myself. In the past two weeks, I've left the house a total of two times -- once to take a walk on the road, once to sit on my own deck to have a drink with Jamie and our friend Marc (the only non-family member I've seen in person this whole time). I've weighed the prospects of taking a run to the super market, just to see the surreally bare shelves and with my own eyes, but I fear Jamie wouldn't let me back in the house. For all the practicality of Social Distancing, I do worry we'll start seeing each other as germ factories, even once the quarantine is lifted.

What I absolutely refuse to do, however, is abide by the insistence of some that we use self-quarantine to tackle that list of, "If I only had the time..." aspirations. Being stuck in the house hardly grants most of us any extra time to write that novel or learn to play an instrument or vacuum behind the refrigerator. If anything, there's more to do as we learn to work and school in new ways while still trying to keep up with the basics. And to all the humble braggers out there, posting pictures of their well-organized home-school set-ups (complete with cooperative children) and homemade hand sanitizer, I say, "Life is not a competition". Certainly, we all process fear in different ways. As in pregnancy, many are in the "nesting" phase, desperately trying to being order to chaos and claw at a sense of control when everything is otherwise a tornado of turmoil. Pecos Bill, where are you when we need you?

Jamie used to say, "Mourn the perfect pregnancy" when contemplating guilt over C-sections and premature births. I say, "Mourn the perfect life," as a quest for perfection is lost before you ever try to achieve it. If I hear anyone complain about having "wasted the quarantine," there's gonna be hell to pay. I hear enough reports from friends who are permanently disabled being told, "Yeah, I'd like to retire early, too." Yes, disability and this crisis are opportunities to better ourselves, but not at the expense of self worth or to foster self-righteousness. If you can't open yourself up to learn from change, maybe you should retire.

I'm also waiting for verisimilitude to catch up with reality, so I don't have to keep criticizing TV and film characters for shaking hands, just as I lament seeing a good dive roll or running from a zombie, knowing I no longer have that option in my survivalist bag of  tricks. That's the nostalgia for simpler times we took for granted: Just this morning, I caught a glimpse of my lunch bag out of the corner of my eye, and it was like finding a buried artifact from a lost civilization.

If there ever is a scripted Friends reunion show, will it be, "The One Where They Were Quarantined," so Phoebe and Joey can finally get together?

Even Thomas -- the perfect semicolon cat -- can't quite be  posed perfectly enough to capture this pause (paws?); but he tries, just by being himself:

Sunday, March 08, 2020


This week was one that exhibited how much I've gained from my stroke: As Leader of the Ability Employee Resource Group at work, I helped facilitate recognition of March as Brain Injury Awareness Month by partnering with Goodwill of Northern New England's Neuro Rehabilitation Services to bring a  speaker to the Portland area. Kevin Pearce was a champion snowboarder who suffered a Traumatic Brain Injury while training for the Winter Olympics in 2010. He has since used his accident to fuel his Love Your Brain Foundation and his mission to make a positive impact (no pun) on the BI community and to influence brain safety in extreme sports. Even though the similarities between Kevin and me end with the fact that our brain injuries happened around the same time, I did my research on him by watching The Crash Reel -- a documentary covering his injury and recovery -- which I think is the most balanced portrayal I've seen of BI recovery challenges from the perspective of both the survivor and his/her support circle. Because Kevin was so established in his field at the age of 22 and his identity was so tied to his physicality, I think he had some unique hurdles in overcoming both his and his friends desire for him just to be "the same old Kevin," as well as his family's desire for him to remain safe and healthy; but I could certainly identify with those conflicts, as well as the quest to find his new purpose and a sense of independence. If I'm allowed to pat myself on the back (left shoulder only), I admire how both he and I have used our ten years of "recovery" to accept who we are, not mourn who we were.

So it was my pleasure to have the opportunity to tell him as much in my introduction at the event. Below is the best picture I have of the somewhat awkward hug we shared as he entered the stage and I exited (how do you properly greet someone in the COVID-19 Age?). Can you tell which is the young, handsome, oozing-with-positivity athlete and which is the middle-aged, lop-sided, disheveled schlub?#LoveYourBrain