Friday, October 21, 2016

More speaking about Speechless

   JJ isn’t the only one with an alarmed look. 
   In my last post, I wrote about how much I appreciate Speechless, the new sitcom on ABC about a family that includes a boy with Cerebral Palsy who uses a power wheelchair and a speech device.  I said that I like the show and am glad that it’s on, despite some flaws, including that JJ is strangely mute.  As I said, I don’t know of people with C.P who can’t vocalize at all. 
   This flaw stuck out so much in last week’s episode that it was nearly fatal.  If JJ’s not speaking continues to be used this way, it will ruin the show. 
   I actually liked the episode.  I thought it was pretty good, pretty funny.  JJ and his attendant take off for a day, and it’s hysterical that they keep getting special treatment and free stuff (yes, this happens!). It’s funny to see the attendant taking advantage of and having fun with this and how this eventually pisses JJ off.  Meanwhile, the rest of the family goes off and does things – paintballing, ice skating – that JJ can’t do and, amusingly, end up guilt-ridden about this. All this was a rather smart send-up of how the non-disabled react to and feel about the disabled. 
   But there was one scene that almost derailed the whole thing.  In the scene, JJ and the attendant are getting into the van.  For whatever reason, the attendant puts JJ’s communication board into his backpack and then puts the backpack on the ground outside the van.  The attendant then proceeds to start the van, and all we see is JJ in the back looking alarmed and angry, knowing that his communication board is being left behind. 
   Why doesn’t he yell, if he can’t actually say anything?  Why doesn’t he scream?  Why doesn’t he cry? 
   No wonder he looks alarmed and pissed.  Not only has his mode of communication been taken from him; he is rendered completely mute, with the show’s title taken all too literally. 
   I did love the subsequent scene, with JJ expressing his rage, letting his attendant have it, quite literally.  But then, to make up, the attendant lets JJ drive the van.  Really?  Come on! 
   It can be said that this also sends the show off the rails, but it’s easier to see this as just the usual, over-the-top sitcom schtick.  And it’s pretty funny to see, in the episode’s closing, how the over-protective mother reacts when JJ tells her that he drove the van.        

Friday, October 7, 2016

Not quite speechless about Speechless

  I want to hear JJ talk.  Yes, he should always speak up for himself and not have others defend or argue for him, but, more than that, I want to hear JJ speak. 
   Why does JJ, who has Cerebral Palsy like I do, not talk at all, as if he’s mute? Why can’t he talk and be hard to understand, as with me?  This is the case with many people with C.P. Perhaps I’m na├»ve, but I’ve never met anyone with C.P who can’t talk at all, who is mute.  The only time JJ vocalizes is when he laughs, groans or exclaims.  
   And why doesn’t the communication device he uses, with a laser attached to his glasses, speak?  Most such devices nowadays speak.  Why is JJ stuck with needing someone to read what he points to? 
   Yes, I have these quibbles and gripes about Speechless, the new sitcom on ABC about the Dimeo family, whose three children include the teenaged JJ, who has Cerebral Palsy and uses a power wheelchair and a communication device attached to it.  But I have to say that these complaints are nothing.  Overall, I am amazed that such a program, let alone a comedy, with a vital, young, severely disabled character, is on broadcast television. One of my attendants said that, because of this, watching the show is “surreal.” He means he has never seen anything like it on T.V. A huge bonus is that the boy who plays JJ, Micah Fowler, has C.P, albeit reportedly not as severely.  Wow!  This is a gigantic step for television, especially for those who know how hard it is for disabled actors to get work. 
   There are many things I really like about the show.  I like it the whole family is sort of disabled, not picture-perfect, with their messy and frenetic lifestyle.  I like it that the mother, played by the driven Minnie Driver, is a handful and sometimes downright unlikable, in her efforts to get the best for JJ.  I like the tension with JJ’s siblings, with his brother resenting all the attention JJ gets and his sister wondering if she runs track because JJ can’t. 
   There is also the wonderfully snarky humor, like the oh-so P.C school principal pointing out that the school mascot has been changed to the banana slug, which has both male and female genetalia. 
   Yes, some things are awfully broad and over the top, like JJ suddenly announcing in the first episode that he is running for student council to the cheers of the whole school.  Such is par for the course in a sitcom, though. However, I really hope JJ’s attendant/reader (a funny character played by Cederic Yarboro, and perhaps the reason that the communication device doesn’t speak) defending and rescuing him, as he did in this week’s third episode when students get angry at him because of the inaccessible homecoming bonfire being moved indoors, isn’t a trend. 
   Perhaps I shouldn’t be surprised that JJ doesn’t drool or has many spasms and that he isn’t seen eating. JJ has been sanitized, even made pretty, with the messier aspects of C.P air-brushed away.  (Maybe this is why, or part of why, he doesn’t speak.) But then there’s a stunning scene, like in the second episode, when the attendant assists JJ, lifting him up, at the toilet.  This is breath-taking – a young, healthy man being assisted to go to the bathroom in a sitcom.  Even now, thinking of this extraordinarily intimate, tender and real scene on national television nearly brings tears to my eyes. 
   Hearing JJ, when he laughs or exclaims, is also quite moving to me.  This is why I want JJ to talk.  When I watch this show, I am seeing myself in a television show for the first time.  This is quite powerful.  I also want to hear myself. 

Friday, September 23, 2016

Going with the flow - not

   I’ve got my penis back.  Yay!
   Literally.  This isn’t a shocking opening line I’m using to get you to read this post!
   Late last month, while I was traveling, I stopped urinating, and I had to go to a hospital emergency room and have an internal catheter put into my penis.  I normally use a catheter, but it’s a condom catheter – and for good reason.
   I use a catheter – a condom catheter – because it’s convenient, because it lets me pee without waiting for one of my attendants to assist me, not because I don’t have feeling in the area (or anywhere else). I have complete sensation.
   Because of this, having an internal catheter inserted into my penis is incredibly painful.  It is a slow, deep burn going into my penis, like the wall of my urethra is being torn little by little. Sure, this is okay for a guy who has no feeling below the waist or neck (and therefore doesn’t feel when he is peeing and needs a catheter), but it’s no fun, to say the very least, when a guy can feel his dick.
   Once the thing – it’s called a foley – is in, the pain subsides eventually, but it’s not comfortable at all, and a tube coming out of your dick looks like a Dali painting.  You worry about the tube being pulled – will it come out? (No, there’s an inflated balloon inside your bladder. Dali again.) – and it hurts when you get a hard-on, with your penis squeezing the hard tube.  Like I said, no fun.
   There’s also the fact that pee can and will come out at any time, so the tube pretty much needs to be attached to a bag at all times.  And, as with pee coming out, things can go in at any time, so there’s a high risk of infection.
   Because of this – I got a bad urinary tract infection – and because of some traveling I was doing, I had the catheter in me for more than two weeks this time.  I’m still dealing with the infection, but at least the fucking catheter is out.
   Yes, this time.  This was the third time I couldn’t pee and had to be catheterized.  The first time was in 2000, and the second was about ten years later.  In all the cases, I was traveling, and not only did I not pee for 18 hours or so, I felt no urge to pee.  It was like I, my body, forgot about peeing.
   I can’t get an answer about why this – it’s called urinary retention – happens.  When I look online, it appears that it’s not uncommon for people with Cerebral Palsy to have urinary retention, but the few urologists I have seen say they don’t know.  They don’t appear very concerned and act like it’s not a big deal, like it’s another thing I live with, like not walking.
   But it’s a big deal for me – a huge, traumatic deal.  I don’t like worrying about when or if I pee, and I wish I knew why this happens and how I can make it not happen.  (I’m now taking Flomax, and I’ll see if that helps, but what about the C.P connection?) I don’t like not having my dick and all the fun things it can do.  Or, really, not liking my dick.            

Friday, September 9, 2016

He understands me

   I have written here before about my friend Carl.  In fact, he and I collaborated on a post in May, after he visited from up north and we took the Metrolink train to Los Angeles to attend a Bernie Sanders rally.  We have an unique friendship, one that has evolved and continues to evolve in remarkable, sometimes challenging, wonderful ways. 
   One of the most remarkable and also challenging and wonderful aspects of our friendship is that we both have impaired speech, caused by the Cerebral Palsy that we both live with. Carl’s speech is a bit less difficult to understand than mine, but it is nonetheless a difficulty that we both deal with constantly.  
   When I first met Carl, talking to each other was quite difficult.  Not only was it hard to understand what the other was saying, but it was hard to understand when the other repeated what the other said to make sure it was understood correctly.  It was a headache and, at least for me, a bit scary, and I kept asking my attendant to act as an interpreter.  Carl insisted that it was important that we keep talking to each other on our own, and, as is often the case, he was right.  In the earlier post, we wrote about discovering how to use our various devices to help in this process, and Carl even got this old dog to learn the new trick of conversing with him on the Skype-like Google Hangouts with the help of a texting feature.   
   I am very happy that Carl and I are now able to talk to each other with no or little assistance.  We sometimes use our devices, but it’s now really a matter of ease and how we feel.  Rarely is it a necessity.  In addition to being liberating, it’s a delight to me that it’s like Carl and I have our own language that no one understands.  We are like two deaf friends talking in a crowd of hearing people. 
   Recently, we were talking to a friend of Carl’s.  I said something, and the guy looked at me quizzically, having no idea what I said.  Carl repeated what I said, and the guy understood and said, “Really?  You got all that?” Carl and I just looked at each other and laughed.  It gets even funnier when someone doesn’t understand us and we understand each other.  Or when someone is absolutely clueless, thinking they understand us when they clearly don’t.

Friday, June 3, 2016

Another Nader?

     Don’t get me wrong.  I love Bernie Sanders.  I love the way he’s firing up young people – and also many others.  I love the way he talks about economic and environmental justice and inclusion for all, and I love the way he gets folks all excited.  Hopefully, this excitement leads to action, including voting. 
   No, don’t get me wrong.  I’m a Bernie Bro.  I feel the Bern.  Anyone who read my post last month about going to a Sanders rally – kind of – knows this. 
   But I’m concerned.  I’m concerned about the mixed messages Bernie is sending and the mixed messages some of his supporters are sending.  I’m concerned that he will end up being another Ralph Nader and give the election to Donald Trump. 
   Remember when Nader ran as a Green Party candidate in 2000 and got enough Democratic votes so that George W. Bush won by a hanging chad or a few hundred?  (I was one of those “Nader Democrats.” My mom was furious when she found out.)
   It is disturbing enough that some Sanders supporters have been rude, uncivil and even violent, threatening delegates who say they support Hilary Clinton, throwing chairs at Democratic party meetings.  It is disturbing that Sanders hasn’t totally condemned this behavior and sometimes blames and goes out of his way to agitate the Democratic party. 
   What’s even more disturbing, what really concerns me, is that this doesn’t help Clinton in what should have been her easy effort against Trump. But that’s not all.  There have been reports that some Sanders supporters say they’ll vote for the mean-spirited, ignorant and reckless Trump in November if Clinton is the Democratic nominee. This may be just another bizarre twist in this wild campaign, and hopefully these Bernie Bros will calm down and act and vote sensibly, but the prospect of Sanders supporters giving their support to Trump not only makes no sense at all; it is downright alarming, downright terrifying if it means that Trump is our next president. 

[NOTE: I will be not posting or posting regularly in the next two or three months because of traveling, etc.  I may post here and there in the meantime, but I’ll resume my regular posting in August or September.] 

Friday, May 20, 2016

That i-word

   Some years ago, a woman who was attending my Quaker meeting at the time approached me after meeting for worship one Sunday.  She told me that she kept a picture of me on her refrigerator and that looking at it always made her feel better.  I just smiled and looked at her, not knowing how to react. 
   I was a bit freaked out.  It was a weird thing to say – even creepy.  For one thing, why did this woman, who I wasn’t close to, keep a picture of me on her fridge?  (This must be how film stars feel – and I’m not a film star!) And why did seeing me make her feel better?  Was it because it reminded her that at least she wasn’t disabled, not to mention severely disabled? 
   Or was she just being nice saying this? 
   Or could it be I was being negative and cynical? 
   For most of my life, I have had pretty much that attitude when people said things like this to me.  I have had real problems with the i-word. For years and years, when people told me that I’m inspiring, that I’m brave, courageous, determined, etc., I would cringe, to say the least.  Really, I hated it.  I thought these people were just being nice.  I thought they were being patronizing. 
   It was like they were taking an air-brush to me, glossing over what I was saying, not seeing what my life is really like. 
   In recent years, though, my thoughts on all this, on the i-word, have been changing (or trying to change). I am seeing that when people say I’m inspiring, it’s because, for the most part, I really do inspire them.  I see that when they see me out there, being brave, determined, it makes them feel more like getting out there and being brave, determined, etc.  I see that it’s not about me, that it’s not about being nice to me and trying to make me feel good.  It’s about them and what they get out of me. 
  I see it when a gay man thanks me for giving him the courage to get out, to be out and be himself. 
   I see it when I meet disabled people and feel energized seeing the different, sometimes better ways they do things and also seeing that I’m not alone.  Yes, I’ve come to realize, I find disabled people inspiring! 
   Sure, this being inspiring is still weird.  It feels odd and phony that what I just do to live my life is so admired, held up to such a high esteem.  It is like a responsibility, a weight, that can be a pain.  On the other hand, if I can help people by giving them strength and courage, by moving them and empowering them, by, yes, making them feel better, cool.  I kind of like it.  At least it’s better than being angry and cynical and always suspicious of people. 
   Now the question is how do I deal with this responsibility, which really can get to be a weight and be quite draining?  How do I handle being inspiring when I don’t feel inspired or inspiring?  And what about when it’s hard to tell whether someone loves me because of me or because of how I inspire them?  Or where is the line – or is there a line? 

Friday, May 6, 2016

Wanting to see Bernie

He really wanted to go. He really wanted to see Bernie. 

My friend was visiting for the weekend, and I had made plans for a special evening. I had a nice dinner ready (spaghetti with red pepper sauce, asparagus, lemon tart), and then we were going to go to a symphony and choir concert at the Colleges here in Claremont – they were doing Camina Burana by Carl Orff. It was going to be special. 

It was a special visit. My friend, Carl Sigmond, and I had met for the first time last summer at Pacific Yearly Meeting after hearing about each other for years. We had exchanged emails since July, but this was his first time in Claremont. He has Cerebral Palsy like I do, uses a power wheelchair like I do, and has impaired speech like I do, and he came here on the train on his own from where he lives and works in Nevada City, CA, a good eight hours away. I like how he is very independent and very smart and how he is not afraid of doing things. I like how he is a lot like me. I haven’t had anyone in my life quite like him, quite like me, at least in a very long time. 

I had this nice plan – to make his last evening here special – but then we heard that Bernie Sanders was speaking in Los Angeles that afternoon. He looked online and saw that we could go see him, and he really wanted to go, saying that he loves Bernie and that this was a great chance to see him. He was so excited that I knew that Carl Orff and a symphony and mass choir wouldn’t cut it. 

So we took off in our wheelchairs, with all our devices and gadgets. The plan was for the two of us to catch the 4:17 p.m. train a few blocks from my house, get off at Union Station, and then go a few blocks to the park in front of City Hall where Bernie would address a May Day rally. Carl would text my attendants on the phone mounted on his chair and let them know where and when to pick us up in my van, since the trains don’t run late on Saturday. We would all go out to dinner on Olvera Street. That was the plan. Sweet! 

The train ride gave Carl and I time to talk and get to know each other more. It gave us time to learn more how to speak to one another, how to understand each other, how to position ourselves to see more of each other. 

In L.A., we ventured out and zipped through the crowds and over the rough streets and sidewalks, passing over the US-101 freeway. We each had ideas of the best route to get to City Hall, and we kept catching up with each other. I did most of the catching up, as Carl got more and more excited and could barely stay in his chair, ecstatic to see Bernie. 

When we got to the park, there was a crowd with banners and chanting and all the things you would expect – I was right at home in my overalls – but it was nothing like the Sanders rallies you see on T.V. Carl, maybe sensing that something was up and being considerably less shy about speaking to strangers than I am, asked a person in a bright red Bernie shirt where Bernie was to be speaking, expecting full well that we would have to stand in line, go through security, etc.. Carl knew the drill. The woman replied, “Mmm… I don’t... He might not be here. I don’t know. That would be nice.” In other words, Bernie wasn’t coming – sort of like Godot. The woman, with kind, smiling eyes, was letting us down as gently as she could, albeit in a patronizing tone. (I later read that Sanders was in Washington, D.C. at a national press dinner and that this L.A. gathering was essentially a May Day labor rally. Carl realized later that the Sanders campaign website had it listed as a Bernie Sanders rally, rather than an official event.)

Carl was bummed and quite embarrassed, knowing how excited I had been for the special evening in Claremont. He told me that he was sorry, and we returned to Union Station, where we talked more while we waited for my attendants to come with my van and go out to dinner with us. 

But I wasn’t sorry. I wasn’t sorry at all – about not having the dinner I planned and not going to the concert, about going all the way to L.A. and finding out that Bernie Sanders wouldn’t be there. As far as I was concerned, we had seen Bernie. Or, at least, we had felt the bern. 

I sure felt it. I felt the bern when I said okay and took off on the train with my new disabled friend, leaving my attendants far behind. I felt it in the freedom in being able to take off, together, in our wheelchairs, to go somewhere 30 miles away on our own. I felt the bern in the ability and the opportunity for us, with our eye-catching spasms and our hard-to-understand speech, to go where we want and do what we want, just like anyone else, just like any two friends. 

No. I wasn’t sorry at all. What Carl and I did that day, feeling the bern, was so much better than any Orff concert. (And this one was pretty good when I went to the second performance the next afternoon after my friend left to return home.) 

[Thanks to Carl for some editing and tweaking here - and more.]