This may seem counterintuitive, but I don’t like to stand out in a crowd.  I’d much rather just blend in, be one of the guys, and enjoy a kind of social anonymity.  I don’t want to be in charge of the thing, the expert on…, or the guy who knows the answer.  But life has conspired against that desire.  Becoming a disabled retiree at 41 meant two things;  I’d often (always) be the youngest person at my residence, a retirement facility filled with 70, 80, and even a few 90-year-olds, and the wheelchair would be a dead giveaway that I was somehow ‘different.’  This can leave one feeling awkward and uncomfortable.  But what it doesn’t do is lend itself to anonymity.

I have a friend who is constantly telling me what an inspiration I am – my resilience, my ability to adapt, remaining positive in light of so many negative, one might even call them “devastating,” experiences in life.  He means well, and I find his comments flattering.  And troubling.  Because they more or less center who I am around my disability and health challenges.

Award-winning disability writer and activist Chloe Tear observes, “We have to be confident in our abilities, because we get told we can’t do things. We have to be confident in our inabilities, because we get told we can do things.” (emphasis mine)  As people with disabilities, we live in a world not designed for us, and this can lead us to overcompensate (in other words, “prove” the world wrong by showing we can do something) or to downplay or deny our limitations (what I call the failure to ask for help).

Peace, or what the ancient Greek philosophers called eudaimonia – often translated as “human flourishing” or “living well” – is achieved through purposeful action, personal growth, and living in accordance with one’s true nature (meaning potential and limitations).  We hear a lot about tapping our potential, setting and achieving goals, and striving for success, but not enough about accepting that some mountains are too steep to climb, some rivers too wide to cross, and [insert your favorite metaphor for limitations here].

Disability insists you confront your “can’ts.”  And yes, you may surprise yourself and others by turning them into “cans.”  But cant’s are not failures.  They are features – of a disabled person’s existence.  The hardest part for me is the can’ts are what make me stand out.

I recently had an experience that brough this issue into rather sharp relief.  I was at the DMV.  I was completing my application for a California REAL-Id, and was required to present certain paperwork in person.  When I arrived, there was a long line of maybe about 8 people in the “start here” queue.

Both lines led to a desk where a DMV employee would inquire what business brought you in, verify your paperwork, and give you a number to wait for a clerk.  As the person being helped finished, the one person in the disabled line went next, ahead of the 8 people in the “regular” line.  And since I was behind that person in the disabled line, I was next after she finished, again going before the 8 who had been waiting long before I even arrived.

I felt guilty.  I could feel the frustration, boiling over into rage, of those people who had been waiting in line burning on the back of my neck as I breezed through this step of the DMV experience in under five minutes.  What makes me so special?

The answer is disability.  But for every express lane for the disabled, there are probably ten buildings (or restaurants, or stores) I struggled to enter because they didn’t have automatic doors (or the tables were too close together, or…).  But beyond the meager accommodations afforded us with regard to accessibility in public places thanks to the ADA (Americans with Disabilities Act), there is the psychological aspect of deserving (and in some cases – demanding) disability rights.  To navigate that, you have to have confidence.

You have to be confident to stand out.  You have to be comfortable in your own skin to advocate for your needs, insist on them being met, and deal with pushback when they are (or sometimes are not).  Being disabled means being always ‘on.’  It’s a lot of work.

Take restaurants for example.  I learned, early on, that getting to your table and settling in can be almost performative as you try to make yourself “small” and squeeze past other diners in a bulky chair with wheels, disturbing as few of them as possible en route to your table.  Once there, we have the question of what to do with the chair that’s moved out of the way to allow me to sit at the table; I’ve seen it just moved into the path of other diners, haphazardly just pushed to one side so it still occupies maybe a third of the space intended for the person (me) in that position at the table, and worse.  A disabled person has to have the confidence to “take charge” of that situation and when the maître d’ says, “is this okay?” say, “no, it is not.”

When I’m confronted these days with a place ill-prepared for a man in a wheelchair, a lady on a walker, or perhaps a visually impaired person with a guide dog, I sigh, because I know instead of just enjoying my meal or transacting whatever business I’ve come there to conduct, I’m first going to have to stage manage my entrance.  People stare, sometimes without realizing they are.  Some try to help, but I always feel like I’m disturbing them if they do, because let’s face it they are there to eat or transact their business, and I’m “pressing them into service” to meet my needs.  It’s a minefield.

We’ve reached the stage in the post (1002 words) where I usually try to make a point and wrap things up.  I am wrapping up, but without an overarching point.  Following radiation therapy for cancer, I’m supposed to be focused on “self-care” according to my oncology team at the Lucy Curci Cancer Center, even to the point of selfishness should that be necessary.  And to that end I just felt like “venting” about what a hassle disability is, honestly, instead of “making the best of it,” remaining positive, and generating more light than heat.  So yah, today I’m here to tell you – disability sucks.

The last two months have proven somewhat of an existential crisis for me.  I have had more doctors’ appointments and “procedures” in that timeframe than the rest of the year, cumulatively!  And I did have a “what’s the point of me?” moment, when I contemplated how all I really do, apart from writing for you good people, is sit in waiting rooms, then wait in exam rooms, have my blood pressure, my temperature, and my oxygenation recorded, only to be told I need to come back for this test or that image.  It all seems rather pointless when you realize my doctors have done a remarkable job at extending my life in order for me to have a life that consists of doctors extending my life.

On reflection, it was Albert Camus who told us that rather than pitying Sisyphus for the futility of his never-ending, onerous, and pointless task, we should imagine him happy.  In other words, rather than getting hung up on the ‘why?’ of existence, focus on the ‘what?’  And a century before, Arthur Schopenhauer talked about der wille zum leben (“the will to live”), representing a blind impulse without knowledge, or as Robert Wicks described it in The Stanford Encyclopedia of Philosophy (Spring 2024 Edition):  an “animal force to endure, reproduce and flourish.”

Well Al and Art, I am happy, enduring, and flourishing in my own way.  I’ve never been the type to reproduce!