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. 

Growing out of the past - 2

 

   Here’s another San Diego story. 

   This one takes place long after I graduated from high school, after I graduated from college.  It takes place in the mid or late 90’s, a few years before I came out.  This last bit is important. 

   I was in San Diego visiting my college roommate.  We would visit each other a few times a year.  Most of the time, I would go down there, which I didn’t mind at all.  In fact, I would take the train there. 

   As I remember, we were driving around on a gloomy day – not a good day for the beach or our usual San Diego outdoor outings.  My friend got an excited, mischievious look in his eyes and said he had a treat for me. 

   He took me to a strip club.  Yep, a strip club. 

   Let me set up the scene a bit more.  On the one hand, my friend no doubt thought he was doing me a favor.  Of course, he and I talked about sex – or rather, he talked to me about his sexual exploits.  (When we shared an apartment in college, I always found or caught him with some girl.) I’m sure he wondered about my sexual needs.  On the other hand, that’s all I had – a hand, my hand. Yes, I thought about sex – a lot – but it was abstract.  Other than masturbating, I had no sexual experience, no experience of being touched other than to be cleaned or taken care of.  In addition, I wasn’t sure about what I liked.  I’m pretty sure I had a crush on my friend, but I didn’t understand or didn’t want to understand it and certainly didn’t dare admit it. 

   And here’s the scene: we were in a gritty area, and the place was sleazy, just like the stereotype – bare parking lot, flashing neon lights… Inside wasn’t better. I just remember it was dark.  And I remember my friend was excited and happy – for me – and wanted me to be excited and happy. 

   I tried to be excited and happy.  I think I was more amazed, in awe – that I was in such a place, that such places really existed.  My friend probably sensed that I wasn’t having the right reaction and told me he was buying me a lap dance. 

    A lap dance!  What was that?  Again, I tried to be excited and happy, but I think, really, I was terrified. 

   The girl – young woman – came.  She was in a red, white and blue, stars-and-stripes string bikini, and she was skinny, very skinny. As my friend knew, I prefer skinny, but this skinny was wrong, like it was unnatural, like she was on speed or something. 

   It could have been just that.  But, as I look back, I doubt it.  In any case, nothing doing. As the woman writhed and gyrated around and against my wheelchair and over me – I don’t remember if she removed any part of her bikini, which should be a hint - I just wasn’t excited.  I couldn’t get aroused.  I definitely couldn’t, to put it bluntly, get it up.  If anything, I felt disgusted. 

   I’m sure my friend got it up (I wish I saw that!), and, afterwards, when he slapped my back and asked me how I liked it “buddy,” I laughed and told him yeah, I really liked it. How could I not? 

   It was another few years until I finally realized that the fact that the woman looked like a speed-freak wasn’t really why I couldn’t get it up, until I finally got the hint, along with all the other hints, and realized, accepted the fact, that I was gay.  (My friend wasn’t exactly thrilled when I told him.)       

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.   

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!