Thursday, September 15, 2022

Growing out of the past - 1

 

   This summer, I have found myself focusing a lot on the past, thinking about what I used to do, what I can’t do anymore.  For the most part, this has been painful and upsetting, like a hole I can’t get out of.  It has also been curious, in that it has been 5 years since my spinal surgery, which left me far more disabled and changed my life dramatically, and I thought I would be over this by now.  Why are all these memories hitting me like a wave now? Why am I clinging onto the past?  It’s like I’m stuck on one of a stages of grief. 

   Not all of these memories and ruminations have been unpleasant. As I realized during a short getaway in San Diego, some have been flat-out funny or simply what-the-hell amusing.  I thought I would share a few of these here in the coming weeks, starting with what could be called some high school antics in San Diego. 

 

   When I was in high school, I was in a home room with the other disabled students.  (I wrote a poem that began, “We are the crips/ of Room 6-0-9./ Whenever we go out,/ we’re feeling fine.”) I had all my classes in other rooms with non-disabled students, but I went to this room to take tests, use a typewriter (yes, this was before PC’s, let alone laptops), get dictation taken and just hang out.  In addition to being a work space, the room was a safe space of sorts, at a time when mainstreaming was still a new idea, and we disabled students felt like the freaks on campus (I know I did, and this was long before queer and non-binary kids began coming out in force on campus).

   At the end of my Junior year, it was decided the we disabled students would go to San Diego for a few days.  I don’t know how this decision was arrived at – end-of-the-year overnight trips weren’t the usual policy – but, hey, it meant a few days off from school, so I was all for it!  Which is sort of weird, since I was a very serious student, determined to get into an U.C, but I guess this was our version of Senior Ditch Day. 

   As I remember, there were about 15 of us disabled students plus 2 teachers and 2 aides.  (Some of the disabled students had some classes in the home room.) We all met one morning at the Amtrak station in Fullerton, about 40 minutes away – I think it was a Monday – and took the train to San Diego.  When I told this story to a friend in San Diego last month, he was like, “Stop,” pointing out that a group of disabled high school students taking the train already “painted quite a picture.”

   When we got to San Diego, it turned out the teachers had rented a large cargo truck.  We were loaded into the back of the truck, lined up against the walls in our wheelchairs. I think the two aides were in there with us.  The door was slammed down – and it was pitch black.

   We took off, with us in the back not having any idea of where we were at or seeing where we were going.  Not only that, but when the truck stopped or turned, our wheelchairs would lurch forward and back, from side to side, sometimes colliding into each other – all in pitch black.  I think we were laughing, but I’m also pretty sure we were terrified! 

   When the door was opened at our destination and we and our chairs were in a jumble – it was pretty amazing that none of us didn’t tip over and/or were injured – it was clear there was a problem.  It was decided that on future truck trips, we would be taken out of our chairs and laid on the floor.  So that was what was done: whenever we went out in the truck, we were each taken out of our chairs and laid on blankets or sleeping bags on the floor of the back of the truck.  We were still literally in the dark, not seeing where we were going, but at least we were safe, not careening into each other in the pitch black – although our bodies may have rolled into each other (no doubt fine – or not - to us teenagers!). I think one guy had to stay in his chair, because he was too difficult to transfer in and out of his chair, and an aide stabilized his chair.  I don’t remember what was done with our chairs. 

   I can’t imagine how the two teachers and two aides handled this adventure – how did they manage to transfer us out of and into our chairs and lay us down in the truck, not to mention dressing and undressing, toileting, feeding us, etc (I remember even getting a shower….)? – but it was indeed an adventure, and we kids had a blast. We stayed at Campland, but I don’t remember our set-up or it being set up or taken down.  I do remember going to the zoo, where there were a lot of steep hills that some of us had to be pushed up, and also going to Old Town for dinner.  I have no idea how much all of this cost and where the money came from, and the teachers and aides worked their butts off and no doubt were exhausted, but I remember we had loads of fun – even in that dark horror house of a truck! 

   I also remember going back to school, back to the college-bound grind, and thinking that no one there had any idea of or could even imagine the crazy – bizarre? – fun adventure that I had just been on.  I suspect also that the other school staff and district administrators didn’t hear much, if anything, about it.   

Thursday, July 21, 2022

Disabled by the court

 

   I recently read an article in the Los Angeles Times about more women deciding to be sterilized in the wake of the Supreme Court’s decision doing away with the nation-wide right to abortion.  With many states – not California – enacting stricter and stricter laws against abortions, a notable number of women are taking the dramatic, irreversible step and not taking any chance of getting pregnant and then not able to get an abortion. 

   One woman quoted said she’s “pissed” about having to get this done because of “losing bodily autonomy.” Being sterilized, as drastic as it is, at least gives a sense of control over one’s own body. 

   I finally get it. 

   I have always been for a woman’s right to an abortion.  But it was always somewhat abstract, a lofty ideal of freedom.  It was just about being able to choose. 

   I say “just,” because now I see that it is about so much more. 

   It’s about bodily autonomy, about having that control over one’s own body.  These women, women who are now unable to get an abortion, are now helpless, trapped, without control – so much so that some are doing away with the ability to get pregnant. 

   They have been rendered disabled.

   As someone who has been significantly disabled all my life and then suddenly quite a bit more disabled later in life, I can relate to feeling helpless, trapped, reliant on others, with little control, especially with this being all the more the case in the last several years.  I know what it’s like to be robbed of ability and to have to depend on others (not so much what they decide, in my case of disability).

   What’s more, after reading this article, I, as also a gay man, am all the more concerned that, based on the reasoning in this ruling and comments by Judge Clarence Thomas, the federal right to gay marriage and even gay sex may be in question, on the line. That may seem far-fetched now, but that’s what we thought about the right to abortion not too long ago.  Yikes, indeed! 

Sunday, July 17, 2022

A beautiful, civil mess

   Following is my column published in Friday’s Claremont Courier with another title , “Not all bad, not bad at all, on the Fourth,” which isn’t bad. 

                ANOTHER START ON THE FOURTH

                           by John Pixley

   It was a new day. 

   I wasn’t sure if it would be a good one.  At least not at first. 

   When I first read a few months ago that the Fourth of July parade would be at 10:00 in the morning, I felt something at a loss.  It was bad enough, weird enough, that the parade was canceled for the last two years due to COVID.  I knew it wasn’t a mistake, but I all but wish it was a mistake.  Or that I wasn’t reading it, that this wasn’t really happening. 

   The parade down Indian Hill, pass Memorial Park and over Harrison to Larkin Park, was always at 4 in the afternoon.  It had always been at 4. For as long as I could remember.  Since I was a child growing up in Claremont.  How could it now, suddenly, be a 10?  In the morning? 

   It didn’t make sense.  And this was one of a few major changes to Claremont’s famed Independence Day celebration – the run scheduled for another morning, the festival in Memorial Park ending a 2 instead of 4 – announced in that small notice.  But, for me, it was the biggest.  (This was before it was announced that the fireworks were canceled due to water concerns and that there’d be a special concert by the Ravellers in Memorial Park – a consolation prize of sorts – instead.)

   Later, in another notice in these pages about the July 4 schedule, there was mention of accommodations made for city staff.  So at least some of these changes were made so that staff wouldn’t have to work so much on the holiday.  This was, it seems, another, yet another, change coming out of COVID, including employees being more selective about what they will and will not do. As one who employs people to assist me, I can attest to this. 

   What would all this change be like? What would it be like having the parade at 10, in the morning light, instead of at the end of the afternoon, when the bright light of a bright summer day was beginning to languish?  What would it be like to have this long-time tradition so altered? 

   I set off at 9:30 that morning with a let’s-do-this frame of mind, wanting to be more open to whatever was coming, a kind of exciting adventure, rather than having a grim determination facing a forced, if not unwanted, change. 

   I was headed for Mallows Park, right where the parade turns onto Harrison Avenue from Indian Hill Boulevard.  I actually discovered this to be a pleasant spot for viewing the parade a few years ago after watching the parade from across the street from Memorial Park for literally decades.  As I was about to again discover, sometimes change is good, perhaps for the better. 

   As I got closer, there were the usual fellow parade watchers, a few with chairs and blankets, coming along.  But I noticed some were carrying handmade signs, and I heard yelling or, yes, it was chanting,  coming from the park.  I couldn’t quite see what the signs were saying or hear what was being chanted, but it was quickly clear that the parade wasn’t all that was up this morning.  I just didn’t know what it was and, as with everything else, how it would work, what it would be like. 

   Before I went up into the park, I took a look at what the signs held up along the sidewalk were saying.  I wasn’t surprised that they were signs of protest and that they were pro-choice, protesting the recent Supreme Court ruling nixing the 1973 Roe vs. Wade ruling declaring a nation-wide right to abortion.

   I found a nice spot overlooking the parade route with my back to the gently warming morning sun and close to the rallying protesters. It was striking to me that there were a number of men involved and that most of the protesters were young, some quite young.  The future is in good, caring hands, I thought.

   I was wondering how the protest would go along with the parade, but I sensed that it was nothing to worry about.  I wasn’t alarmed or anything like that.  I was also comfortable with a person across the street having a sign protesting the court’s recent decision relaxing gun control. 

   After all, I figured, those in the parade, or a number of them, like the Pilgrim Place residents with their signs advocating peace and justice or the children riding their decorated bikes and scooters, were expressing certain views or just expressing themselves.  These folks were just joining in. 

   Then the parade started heading down the street in the fresh, new day sun.  The parade at this new time, greeting the morning, kicking off the day, along with the bright-eyed protesters and the heart-felt, personalized signs, suddenly made beautiful, exquisite sense. 

   Morning had broken, indeed.  Like the first morning. 

   As the marching bands and the floating musicians and music-makers passed by the impassioned chanting protesters (“My body! My choice!”), as the sequined drill teams and the festooned cars and trucks and bicycles and strollers passed by the colorful, bobbing signs, it was a lovely thing to behold. It was a new day in these days of disturbing polarization and ugly, all-too-often violent confrontations.  Unlike the destructive, sometimes deadly uprisings and insurrections we have seen in recent years, this was all a hearty, jubilant, if not joyful noise, a peaceable, civil, if not exactly civilized, cacophony.

   When the parade had passed, I made my way towards the protesters, who were also departing, also having made their expressions, their proclamations heard and seen.  I noticed a few of the signs were a bit shocking, featuring profanity that may be considered inappropriate in this setting. I imagined that if the group was from a church, as I suspected, the pastor wouldn’t have been amused and that also some passerby would have been offended. Perhaps a few were turned off to the cause. 

   Then again, I thought, they were just words and a few among many. Sticks and stones… No one got really hurt.  No one was maimed or even killed, as has happened too many times in recent years, including, tragically, as I learned a few hours later, at another small-town parade that morning.  

   Yes, the day overall and even the parade may have been somewhat subdued, especially with the surprisingly small crowd at the Ravellers concert in the evening.  It may be best to eventually return to the usual Claremont Fourth of July line-up.  But on that morning, on that corner, I saw a new beginning, another start, with us gathering, safely and in peace, expressing ourselves despite our differences.  A beautiful, civil mess, indeed.

Wednesday, June 1, 2022

A sign before the time?

 

   In the past two months or so, when out strolling around the neighborhood, I’ve noticed yard signs in front of houses indicating that a high school senior lives there.  “Claremont High School SENIOR,” the sign proudly proclaim.  I suspect the signs are someone’s well-intended expansion of yard signs seen poignantly in the last two years, when graduation ceremonies were canceled due to COVID, indicating that a high school graduate, who missed out on commencement as well as prom and other once-in-a-life events, lives herein.

   The signs may be well-intended, but, for me at least, they don’t work.  When I see them, I feel anxiety and pity – probably the exact opposite of the pride and celebration they are intended to signal and provoke. 

   I feel anxious, because I remember how hard I had to work in my senior year of high school.  I think of all the challenging classes, each with a steady heavy load of assignments.  I think of taking tests after test and spending weekends typing papers.  On a very personal level, I think of worrying about getting a passing grade in Algebra II, which I had to do to get into the University of California, which, at time, appeared to be my ticket out of home and Claremont (this was before I came to really appreciate Claremont).

   I feel sorry for the seniors in these houses. If I were in their shoes, this sign, proclaiming my situation to all, wouldn’t be something to cheer but a public constant reminder, more pressure to achieve. It would have felt like something of a scarlet letter, signaling my heavy workload, my burden, weighing me down all the more. I would have felt so much better, so much more like wanting to celebrate and take pride, having a sign up after I knew I had earned that diploma.

Thursday, May 26, 2022

Living my life is worth more

 

   Lately, I’ve been trying to hire a personal care attendant (PCA). Yes, a personal care attendant, someone to assist me, to attend to my personal care needs – bathing, toileting, dressing, grooming, feeding, cooking, housekeeping, driving, etc.  At least, that used to be the preferred term. 

   Now, it seems that the preferred term is caregiver, at least on job sites and the like.  I have a problem with this, with “caregiver.” It’s bad enough that, at least on Craigslist, job like this are categorized as healthcare, as if I need a nurse or CNA, unless I venture into the wild west of “et cetera.” But that’s another gripe for another day.

   My problem with “caregiver” is that it implies that the care is offered voluntarily, as a gift (giver), without the need or expectation of much or any compensation. As a result, at least in the publicly funded realm (which I rely on), a caregiver, like many in the caring or domestic professions, like baby-sitters, day-care workers, CNAs, even teachers, isn’t paid more or much more than minimum wage or more than the least they can be paid.  In other words, my attendants, who enable me literally to live my life and to be a productive member of society, should be paid more, much more, than the amount that is typically paid by governmental agencies. 

   In addition, the term “caregiver” is not a professional term.  Again, it implies that help is given, that something is volunteered, rather than a job to be done and paid well or fairly for.  Also, and perhaps most importantly, “caregiver” implies that I rely on their kindness and not that they are here because they are being paid.  Yes, my attendants hopefully aren’t here just for the money, but what I like about “personal care attendant” rather than “caregiver” is that it implies that they are employed and paid to do a job for me, a critical, vital job, to attend to my needs to live my life.