An inconvenient sign

   There were signs posted at each check-out stand when I went to the market yesterday.  Big news! 

   “This year, Stater Brothers is giving time off to its employees so that they can enjoy time with their families.”

   So what does this mean?  The sign went on to note the special Thanksgiving hours: Wednesday, November 23, 7 a.m-11 p.m and Thursday, November 24, 7 a.m-5 p.m. 

   Gee.  Thanks.  Employees get to get off at 5 to rush home and likely enjoy a piece of pie with their families and maybe eat a plate of warm-overed leftovers before crashing after working so hard in the rush of people preparing for the big meal.  That someone else made because they were working, maybe until 11, the night before.

   Like I said, gee.  Thanks. 

   Is spending money so important that the market has to be open until 5 on Thanksgiving?  And this is closing early!  Does the market have to be open at all on Thanksgiving?  Would we all go crazy and fall apart if the market was closed on Thanksgiving? 

   Can’t we be sure to pick up that extra cranberry sauce or that last bottle of sparkling cider before Thanksgiving?  (I suspect we would if there was no choice.) Isn’t this why the market is open until 11 on Wednesday? 

   And what if the market closed early, say 5, on Wednesday – so that employees can get home at a reasonable hour, rest up and really enjoy Thanksgiving with their families? Would it be the end of society as we know it?  (Maybe a good thing.) Since when did convenience, our convenience, become so important, paramount? 

   It was clear that it is all about our convenience.  Not only is the market open until 11 on Wednesday and also until 5 on Thanksgiving, at the bottom of the sign, it said something like, “Thank you for your understanding.” As if we are put out by the store closing at 5 so that employees can spend a bit of time with their families and we are being asked to forgive this.

   Also, it’s as if Stater Brothers just came up with this idea – “this year.” Doesn’t the market usually close early on Thanksgiving? 

   And why does it need this explanation?  Why not just say, “We are closing early on Thanksgiving?” I realize that what really bugs me about this sign is that it’s an insult. It’s an insult to the workers, because it makes it look like it’s their fault the market is closing early, causing inconvenience for us, due to their perfectly understandable needs, if not rights, to rest, to spend time with loved ones, to have and enjoy time off.  It’s also an insult to the rest of us, or it should be, because it shows and makes us feel guilt for how much we expect convenience.

Hat trick

 

   What a difference a hat makes. 

   When I began going out in my wheelchair on my own, it was a huge step.  Although I was able to go a few blocks instead of miles as I used to go before my surgery, it gave me a real sense of liberation, being able to go out and be on my own, away from my attendants and not needing to rely on them. 

   However, I couldn’t go out like this if it wasn’t pretty warm, meaning below 80 degrees or perhaps even a bit higher.  Probably because of the neuropathy that I’ve had since the surgery, my arm would tighten or freeze up when it was cooler, and I would have a hard time driving my chair. There were times when I had difficulty getting home, Although it’s pretty warm here for a good part of the year, this did put a limit on this freedom.  It was all the more frustrating, because I particularly love going out on cool, crisp Fall and Winter days. 

   In fact, this is why I spent months last year going through the process of getting a “head array,” which allowed me to drive my chair with my head. (During these months, because I was afraid of getting stranded, I didn’t go out on my own, even though it was quite warm.)  I really thought it would solve the problem, but, after all the test driving (in a pretty controlled environment), I ended up having difficulty using it and not using it, and it was just in the way when I wasn’t using it – which was all the time.  So I had it removed and put away (perhaps for another day).

   Also, early this year, I decided to have my hair all cut off. It was time for a change and just made things easier, and I now keep my hair as short as possible without having my head shaved.  With my hair gone and my not using the head array and without the regular headrest which I also had removed this year, I realized that I could wear my hats again. 

   Over the years before my surgery, I collected quite a fun bunch of hats, which I used to dig wearing along with my overalls and high-tops or Doc Martens.  I’m not talking caps.  I’m talking cool beanies and Peruvian hats – the wool ones with ear flaps and yarn dangling down and able to be tied under the chin if desired. 

   So I began wearing my hats again and found – what do you know? – that I could go out alone in my chair when it was cooler. It’s said that most of your body heat escapes from your head, and it turns out this is true.  The hat keeps the heat in my body like a lid or even a heater. This means I can now go out on these nice Fall days.

   At least on most days.  I’ve been testing how cool is too cool or cold for me to go strolling.  It turns out that the upper 60’s is about my limit.  I can get by when it’s a bit cooler – low 60’s – but it’s not enjoyable.  When it’s colder, I may not totally freeze up and need my attendant to drive my chair as has happened in recent years.  (I’ll find out for sure in the coming months.) All this is good to know, and although I’m still trapped when it’s below the high 60’s, that’s still a good ten degrees cooler when I can go out on my own.  That’s ten more degrees, at least, of freedom. 

Whose Jesus is it anyway?

 

   “Shame on you!  Shame on you!... This is a house of Christ!  All this has nothing to do with Christ!... Read your Bible…!”

   The young man went on yelling as he walked slowly up the aisle with a couple children in tow.  Clearly, he was upset.  Clearly, this wasn’t what he was expecting on this Sunday morning at a church service. 

   Clearly, this wasn’t the right Sunday to be visiting this church seeking a Christ-centered message. 

   I visited the Claremont United Church of Christ this last Sunday, instead of going to Quaker meeting, for the performance of Raven Chacon’s Voiceless Mass, which won the 2022 Pulitzer Prize in music.  As a story in the Claremont Courier noted, this was to be the piece’s West Coast premiere and only its third live performance, with the composer present, and the service was to be “unlike anything the church had done in the past.”

   This I had to see.

   The piece was definitely unique – eerie and very modern, supposedly giving a voice to entities that aren’t usually heard or given a voice.  Not only is the 20-minute work unusual, it is done in an unusual, site-specific way, with the musicians placed throughout the sanctuary, accompanied by the church’s massive organ (which I didn’t really hear).

   But it wasn’t the piece, which turned out to be performed in the second half of the service, that upset the man.  He didn’t even stay for it. 

   The man’s outburst came while Chacon, who is Native American (and the first Native American to be awarded the Pulitzer), was giving a homily or prayer with voice and electronics, a la Laurie Anderson.  It was addressed to “mother” and asked for forgiveness for causing so much destruction of the earth. Not your usual Christian, Sunday morning prayer. (It was so different, so advent-garde, that, at first, I thought the outburst was part of the presentation!)   

   Never mind that, up until that, there had been much focus on Dia de los Muertos and honoring the dead.  What’s more, on this day before Halloween, there were children dressed up as princesses, witches and goblins. 

   All this – never mind the Voiceless Mass performance – was too much for the man.  Clearly, this was, for him, not what Christ is about. 

   Clearly, his Jesus wasn’t one that encouraged openness – and most likely one that wouldn’t approve of me, a gay man, much less at a Sunday service.  His concept of Jesus was rigid and restrictive, not one that provides a safe space to explore and discuss different ideas, identities and views.  One of the ministers, who followed him out of the sanctuary, said later that the man was a first-time attender – oops! Wrong Sunday, maybe the wrong church, to visit! – and that his protest was a reminder of, “a testimony to,” the importance of having a loving, open community wherein all are embraced.

   When another man in the congregation shouted to the protesting man to “go home,” it certainly didn’t model this vision of radical inclusion.  But it definitely added to the drama – and the challenge – of this Sunday morning.      

Growing out of the past - 3

   Here is another high school story.  Or another high school kids story. 

   This one is not about what happened at school or about a school activity.  But it is about me and some other disabled kids who attached high school with me and a few, I think, a local junior college. 

   When I was growing up, there was an organization that is now called Ability First but back then was called the Crippled Children’s Society (I know – wince). It ran summer residential camps, which I attended, and, during the school year, it ran after-school programs, which I sometimes attended.  It now caters to intellectually disabled clients, but, back then, it was mainly for the physically disabled, and we called it CCS and were friends with the cool people who worked there. 

   Like I said, I attached the after-school programs only now and then, and I didn’t really attend the high school/young adult program, which was on Friday evenings.  I heard about outings to the movie theater and the bowling alley.  I wanted to go on the overnight Halloween trip to the residential camp in the mountains.  That sounded hella fun, but, for some reason, I couldn’t go, and I was bummed. 

   There was one overnight trip I made sure to go on. One of the guys who worked at CCS and who was also an aide in the disabled students’ home room at the high school and who I got to be friends with set up a tour of Hearst Castle, the estate built by the obsessive newspaper magnate William Randolph Hearst on the Central Coast.  This was supposedly the first time a group of disabled people was allowed to tour the lengendary site, which I had seen several times from afar on trips on Highway 1. I don’t know if this was true, but, in any case, I wasn’t going to miss this unique opportunity (and it being a trip to a historic site no doubt encouraged my parents to let me go).

   The tour was scheduled for 7 a.m on Sunday, Palm Sunday morning.  The plan was to drive up in a bus on Saturday and drive back home after the tour on Sunday.  It was the first weekend of Spring Break, which turned out to be a good thing. 

   The drive up to Cambria, where we spent the night, shouldn’t take more than five hours, if that, but it felt much longer, like all day.  I’m not sure why.  It wasn’t a bad trip, and, after all, we were a bunch of excited high school and junior college kids and some young folks helping out.  Maybe it was hot. 

   We spent the night at Cambria Pines Lodge, which we understood to be a well-known, historic spot.  It wasn’t fancy, but it did have a rustic charm.  I remember having dinner in a dining room and that it featured sweet and sour pork.  Then it was pretty much bed-time, at least for the “adults,” not least because we had a very early morning and long day ahead of us. 

   But not before we took off the bathroom doors.  Yep, the doorways to the bathrooms in the hotel rooms were too narrow for our wheelchairs.  So, in spite of or because of exhaustion, our chapparones/caregivers took off the doors. 

   I have no idea how the trip and hotel was paid for or if we were charged for the doors.  All I know is that, because our tour was at 7, we were out of the hotel before anyone saw the doors, at least that I know of. 

   We were allowed to take our bus instead of the shuttle that everyone else had to take up to the castle.  We were all sleepy but excited, although I’m not sure if everyone appreciated the significance of the site and the occasion like I did. I think much of the place was not accessible to us and that the tour was shorter than usual, but what we saw was pretty impressive (although I was a bit jaded after having lived and toured in Europe). What I remember and liked most were the two pools – the inside one with blue and gold tiles and the outside one with Greco-Roman statues and a breath-taking view of the Pacific. Now, that was living!   

   The drive home, as I remember, we long and exhausting.  We stopped at Andersen’s, another well-known spot (famous for pea soup), in Buellton on Highway 101, not at the restaurant but at the shop for some cheese cake. 

   By the time we got back to our parents waiting at CCS, we were half-past dead, as the song says.  It was a good thing there was no school that week.  I was thrilled – and slept for two days.  

The COVID excuse

 

   I have meetings with my case workers at different agencies that assist me.  These meetings take place annually or semi-annually. 

   For the last three years, these meetings have not been taking place in-person due to the pandemic.  Before this, the case workers would come to my house for an in-person meeting at the appointed time. 

   I get why this is happening – or I think I do.  Since the agencies work with vulnerable populations, I presume it thought that the client should be protected from getting COVID.  At least that should be the reasoning. 

   The problem is that, with my speech impairment, it is hard enough answering exacting questions and communicating my needs, even with an attendant or another person present to facilitate.  At these meetings, it is important that I am clear, precise and forceful in conveying my situation and needs.  I’m at a disadvantage when on Zoom – the worker doesn’t hear me and see my complete language as well – and when, as with one of the agencies, the interview is done on the phone, forget it.  Yes, my attendant is speaking for me, but it’s like I’m not there.  Not only am I not seen, my voice, my expression, is not being heard. 

   As a result of not being heard clearly or heard at all, I think, I have had to go through an appeal process, which involves a state hearing before a judge (on Zoom at least), twice.

   I am wondering, now that the pandemic is supposedly winding down and more and more people and entities are forging ahead to normal or some kind of normal, when and if the in-person meetings will resume.  I’m happy to have the worker sit, masked, at the other end of the dining table (where they usually sat in the past). But I wonder if, and almost suspect that, it will be too easy to continue these virtual meetings, using COVID – or whatever, something else – as an excuse.  It’s easy, because it’s much easier to sit at the office or at home than to go out to clients’ homes. (Hell, I’m happy to go to the office for an in-person meeting…)   

   Don’t get me wrong.  I’m all for meeting on Zoom, as frustrating and exhausting as it can be.  Zoom has been a gift from the pandemic.  Really.  It has opened the door to making meetings easier, to saving energy, money and time, to reducing pollution and also expanding possibilities.  But, also, I think there are some meetings that should be, that are important to have and are better in person.