Seeing my life, the world change at camp

   Years ago, long before I began this blog, I wrote a piece that I entitled “Growing Up and Out at Camp,” about going to Camp Joan Meier on the coast above Malibu and other summer camps for disabled kids.  I opened by describing a camp dance at Joan Meier, at which the arts and crafts director, a young woman named Chris who I had my eye on (this was before I had any inkling of sexuality), stood me up from my chair and held me up as we gyrated and sweated through the song, which turned out to be the long version of the Doors’ “Light My Fire.”

   I wrote about how Chris and the other hippie-ish, young people who worked at the camp, who were paid a pittance and had to love the exhausting work that they were doing, let me, away from my protective parents for two weeks each summer, have fun, try new things (sing at the talent show...). I wrote about how they let me explore, about how going home was always so sad (I’d mope, if not cry, for days afterwards), about how I strongly feel that I began to be who I became, who I am today, at camp.

   All this came back to me, came gushing back to me in wave after wave, as I watched Crip Camp, a documentary that recently premiered on Netflix, following right along in the door-busting steps of Special and 37 Seconds which also premiered on Netflix and which I have written about in earlier posts.  The documentary is about Camp Jened, a summer camp for disabled kids in the Catskill mountains from the 1940’s and 1970’s. One of the film’s directors attended the camp when he was growing up and got hold of a remarkable treasure trove of black-and-white footage from that time and also interviewed a number of former campers and staff members.  Seeing the footage from the camp and hearing about all the adventures and all the freedom that the campers felt (not only were there no stares, there was no disability hierarchy – with those with polio at the top, because they look and talk “more normal” and those with Cerebral Palsy are at the bottom) is incredible enough.  This alone is quite satisfying and sweet, enough for a film. 

   Even more extraordinary is how the film traces how some of the campers, like Judy Heuman, went on to be leaders in the disability rights movement, with a number ending up in Berkeley, the hotbed of activism.  The film makes the point that they were inspired by their time at camp, where they were free.  The staff had a big part in this.  I don’t know if they intended to groom future rights activists; they probably just wanted disabled kids to be able to be kids.  However, Camp Director Larry Allison, who doesn’t look at all like what one would imagine, does say, “The disabled aren’t the ones with a problem.  The non-disabled are the ones with a problem.” – an astonishing notion at the time, one that would be a major principle years later in disability culture and studies. 

   I do wish the first two-thirds instead of just the first third of the nearly two-hour film was comprised of the camp footage – I just loved seeing it and the memories it brought back, and I already knew the movement history – but it is a most compelling, comprehensive and educational history.  The end shows a few campers returning to the site of the camp, as well as pictures and footage and life-span dates of campers who have died, with Neil Young’s “Sugar Mountain” (part of an excellent, evocative soundtrack) in the background.  This may be the most breath-taking, poignant sequence.

   Camp Jened appears to have been somewhat or much less structured, with the campers left to decide how to spend their time and even to prepare a meal when the cook is off, than the camps I attended. Also, I wasn’t involved in the disabled rights movement, but I did very much make my presence known and forged my path forward here in Claremont.  And I have a close long-time connection to Berkeley through family and friends (also, my dad went to Cal and started telling me about the “rolling quads,” the first disabled students there, when I was a child, giving me something to strive for, even if I ended up at U.C Riverside instead).       

   Two scenes stand out for me.  One is a former camper saying that one of his favorite memories of camp was of a girl he like putting her hand “on my cock.” The other is a scene at camp, where a group is having a discussion around a table.  One girl speaks, her speech extremely garbled, all but impossible to understand (there aren’t even the subtitles that are provided in other cases, leaving us all feeling bewildered, lost, stupid).  A counselor asks if anyone has understood her, and a boy with impaired but less impaired speech, interprets. I found this tiny moment of mutual compassion and assistance, of the disabled helping the disabled, to be tremendously, surprisingly moving.

   But, to be honest, what I love more than everything else that I love about this documentary is not only seeing but hearing folks like me, with severe Cerebral Palsy, with speech that is difficult to understand, presented to a wide audience. This is a door opening to being acknowledged, accepted, understood. As is evidenced with going to camp, nothing else is more liberating and empowering.

Vital signs

   It is hard not to feel hopeless during this pandemic. I realized last night that I’m now feeling the same way I felt when I was in the nursing home for four months after my spinal surgery three years ago – like I was in jail.  Except now, it’s even worse, because friends won’t and shouldn’t come over.  My world feels like it’s getting smaller and darker (And I worry about when this will end, especially when I see people out and about and friends tell me about seeing bars packed, despite there being a statewide shelter-in-place order.)

   So, as two friends have asked me, where is there hope?  Where is there light?  Is there any hope, any light in all this?    

   It turns out that things may get better because of this crisis.  For example, here in Los Angeles County, authorities are finding housing and shelter for the homeless within weeks.  This is a process that usually takes months or years, sometimes forever, dragged down by protests and litigation, fueled by NIMBY concerns, residents and businesses not wanting the homeless in their area or town.  Concerned about hygiene, stopping the spread of the coronavirus and also the need to quarantine, the state has been buying up hotel rooms and providing campers and trailers and the county is making over 40 recreation centers available for use as shelters, all in a super-expedited process.  Perhaps, when this crisis is over, this will be a model for dealing, finally, with what has been, up until now, arguably the top crisis in the area. 

   Another example of social improvement coming out of this pandemic can be seen in a friend of mine setting up an online show enabling queer musicians and performance artists to make money when live shows aren’t allowed. This is truly inspiring, showing a can-do spirit and also that at least some performances can be put on relatively cheaply without costly venues and staff.  Likewise, many people, including myself, are learning or being reminded that they can work, have meetings – even Quaker meetings – and visit and socialize – and party – with each other online.  This isn’t the same as in-person contact and activity, but it’s a nice substitute, and a balm, when that isn’t possible. 

   Related to this, there has been an added, unexpected benefit.  In places such as China, where there have been shelter-in-place regimens, air pollution has gone way down, with the sky being far more clear.  With no one driving, the air is much cleaner.

   Like the sky clearing, these are signs of hope, signs of life going on in the face of death, signs that we are not giving up. Not only are we not giving up, we are, if not thrilling per se, making things better.  These are slivers and glints of light in the dark, green sprouts coming up from the black dirt.

One step forward, three steps back

   Last week, I wrote that the coronavirus pandemic was creeping me out, if not freaking me out.  Well, now it’s straight-out freaking me out. 

   A few days after writing that Scripps College canceled all its public events, I learned that all the colleges here in Claremont closed.  Until the Fall.  Poof.  No more concerts plays, lectures.  No more of much of what makes Claremont such a wonderful, rich place to live. 

   What’s more, even my Quaker meeting shut its door.  And the day after I went to a movie even though I couldn’t go to meeting, which I thought was weird, the cinema closed. 

   This has been really hard on me.  Over the last year or so, I’ve been trying to get out and be in community more and more.  I’ve been fighting isolation.  And now I can’t go out.  Now I’m being isolated.  Many friends are even afraid to come over, mostly not wanting to get me sick, making me feel even more isolated. 

   It gets worse.  I went shopping this morning, and while I could get most of what I wanted, I couldn’t get such basics as rice, milk, pasta and bread.  Now I’m wondering what I’m supposed to do.  Will I get the medications and supplies that I need?  Will I get the help I need? 

   I’ve been having more pain than usual in the last few days.  I realized it’s probably from stressing out. 

   I’m less worried about the virus than the crazy way people are acting – panicking, hoarding, buying guns.  And I’m furious at the Trump administration for not making coronavirus tests available much earlier, unlike in other countries, which is why things are now so dire. 

   This all keeps feeling like a nightmare or horror movie – unreal.  It helps a bit to know that I’m not the only one stuck at home, isolated.  It’s not like when life was going on and I was in bed, looking out the window.  That’s the only thing keeping me sane. 

Community cure

   This coronavirus is creeping me out, if not freaking me out.  I’m trying to find the balance between panicking and hoarding and acting dumb like Trump and saying this is just another cold or flu.  I did buy two packs of paper towels and toilet paper, though.  The other day, Scripps College here canceled all its public events for the time being – pretty disturbing and depressing, but probably inevitable, as the college would look stupid doing nothing as U.C Berkeley, Stanford, U.S.C are switching to online classes.  But, on the other hand, Claremont McKenna College is still holding its public lectures. 

   Meanwhile, since long before the epidemic, I’ve been thinking of how we care for or not care for one another.  Here is my latest column, published in Friday’s Claremont Courier. 

                     AT EACH OTHER’S MERCY

   It wasn’t what I had in mind. 

   It never is what anyone wants, friends kept telling me.  Nobody wants to have to go to the hospital.  Nobody wants to be taken to the E.R. 

   But there I was, in the E.R. It wasn’t so much that I was in the E.R – that was bad enough.  I was there again, yet again. 

   This was the second time this year I was in the E.R. I had already gone once in January.  I was really hoping I would make it through February without having to go.  But no.  I was right on track to meet last year’s record, when I went to the E.R thirteen times. 

   As I’ve said before, they should just reserve a bed for me (preferably in a private room). “Oh, yeah, that guy. Right over there.”

   This trip lasted five hours.  Only five hours.  That was well short of the usual eight or ten hours.  In January, I was there all night.  Literally.  And at least I didn’t end up staying at the hospital, as I did for a week in December and three other times last year, once for three weeks. 

   Still, I didn’t get home until almost 9, when I was starving and finally able to have dinner.  And I wasn’t able to do pretty much everything I was planning to do, I was looking forward to doing, for those five hours.  Good thing that I was able to eat what I was planning on and looking forward to eating and that it didn’t take long at all to get ready. 

  Still, it was five hours, I felt, taken from my life.

   I have come to realize that this was perhaps – perhaps, hopefully not – a new norm in my life.  Let’s just say that this was one of the dramatic changes in my life since having to have spinal surgery three years ago at the end of last month.  As I have written about in recent months, the surgery left me much more disabled, needing much more help and having to adjust to, or find, a new life.  Yes, I was already disabled before the surgery but didn’t have all the medical problems I now have.  Before the surgery, I usually saw a doctor perhaps two, three times a year. Now, in addition to all the E.R visits, I seem to have a doctor’s appointment once a month on average. 

   As I said, not what I had in mind.  None of this was. 

   Then, as I was lying there in the E.R, something else happened that I didn’t have in mind.  I heard moaning and screaming and then saw someone writhing in pain on a gurney going by.  Nothing unusual there, perhaps – this was the E.R after all.  But it was disturbing.  Even more disturbing, from all the commotion and what I heard being said by the staff and sometimes the woman, including profanities as well as pleas and expressions of gratitude, it was quickly evident that this wasn’t a normal E.R visit. (Or was it?)

   After a short while, it became clear that the woman needed to go, and perhaps was having difficulty, going to the bathroom – did she have a bad urinary tract infection? – and I saw her being supported as she stumbled back down the hallway, apparently to the restroom. 

   Was this woman homeless?  Was she mentally ill?  Was she coming down from a trip, bad or good?  All of the above? Regardless, she was having a physical problem, was in serious pain and needed help.

   She continued to moan and cry out and to say “thank you, thank you” and to politely make requests (“May I have a female nurse?”). The male nurse kept urging her to use the restroom and told her that she would be taken to “another unit” where “we can give you a shower”.  And the commotion continued, with a staff member wondering if a gown should be used when dealing with the woman and a woman complaining that there was “a woman in the men’s room.”

   I heard all of this and saw bits and pieces of it as I laid there, waiting for the help I needed, wondering how long it would take, thinking about I was once again having to rely on the care and expertise of others, and I wondered.  Was this woman getting the help, all the help, she needed? 

   Why was there such a commotion, in this place, of all places, where anything could happen?  Was the staff really prepared to deal with this woman?  Or was it that the staff was not prepared for such situations? 

   After all, I have read that hospitals and jails deal with and accommodate the homeless and mentally ill on pretty much a steady basis.  It is said that the homeless and mentally ill routinely go in and out of hospitals and jails, sometimes going from one to the other.  It’s also said that this is more or less passing the buck, that this isn’t the way for the homeless and mentally ill to get the help that they need. 

   Was the woman, I wondered, not what the E.R staff had in mind, just as she wasn’t what I had in mind, that afternoon, that day, ever?  Why did it seem like this?  I wondered as I laid there waiting.

   Let’s face it: the homeless and mentally ill are never what we have in mind.  It is upsetting when we see someone walking by aimlessly, muttering or shouting to no one.  It is disturbing when we drive around in Los Angeles or Pomona and see tents lined up along the sidewalk or clustered in medians.  

   It’s not what we have in mind. 

   It’s certainly not what we have in mind here in Claremont.  But, as was discovered about ten years ago after years of denial, a fair number of homeless people, some of whom are probably mentally ill, are in Claremont.  We just don’t see many of them.  Many spend the night in Claremont, where they feel safe, then make their way to Pomona, where there are more services for them (not to mention perhaps less notice from police), for the day. 

   We all need care, we all need help, at least every once in a while.  Some, like me, may need more assistance than others, and some may need even more and more. As Governor Newsom pointed out at length recently, we have the responsibility to see that everybody, especially the homeless, gets the support they need.  We are at each other’s mercy. 

   Or, as I once heard it put and as should be all the more so here in Claremont, we are each by all the others held.