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.