The system's not broken - well, not completely

   In this time of political divisiveness, when everyone is sticking to their ideology and Hell-bent against any compromise, when the reds are evermore redder and the blues keep getting more blue, when nobody can agree on anything – except that they can’t agree on anything! – there is one thing that everyone loves to say and that is that government doesn’t work. 

   It has always been popular to say this.  You always hear people grumbling about nothing getting done and taxpayers’ money being wasted and pledging to “throw the bums out.” This, in fact, is why, either because people got fed-up and decided once and for all to really throw the bums out and try something completely new or because people got fed-up and gave up, Donald Trump was, to everyone’s shock, including his, elected president. 

   Well, I’m here to tell you that government does – or can – work. At least when you take baby steps or, more to the point, deal with (or start off with) little, local stuff. 

   I have written recently about going out in my chair on my own after two years of not being able to do so. In venturing out, I have found a route that is safer and more practical with my decreased ability.  However, there were two rather significant bumps along this route that were difficult or impossible to negotiate in my chair.  One was an uneven sidewalk path between the end of a cul-de-sac and another street.  The other was a lip on a curb-cut that rendered the curb-cut barely a curb-cut. 

   I decided to send out an e-mail to the city and point out these problems.  I did this on a whim, wondering if I’d get a response, much let get them remedied. 

   Guess what?  Within a week or so, I got a response, not only thanking me for my e-mail – about all I was hoping for – but also saying that at least one bump would be paved over until there could be a more permanent fix.  What’s more, the guy asked if he could meet with me so that I could point out the insufficient curb-cut.  This turned out to be unnecessary, and, on subsequent trips along the route, I was quite pleasantly surprised to find both bumps paved over for now. 

   Wow!  Not bad for the no-good, do-nothing government! When I asked for something to be done – even if something could be done – something was done.  With a promise that more would be done.  What’s more, I was offered a meeting. 

   Yes, it was little stuff, baby steps – literally, two small (not-so-small) bumps – but I was heard.  And I was actually helped. 

   I felt like I was getting something done. It was empowering.  Kind of like what our democratic form of government is supposed to do.

My balancing act

   I have gone to the hospital four times in the first four months of this year.  Three of these visits were only to the emergency room, and one, when it turned out I had sepis stemming from an urinary tract infection, resulted in a week-long stay.  Two had to do with my g-tube, and two were occasioned when my urine wasn’t draining through my catheter. 

   No matter how you parse the numbers, this is a sobering, even dubious, record, a lot of visits in not a lot of time.  Indeed, it averages once a month.  I have joked to friends that there should be a room reserved for me in the E.R. 

   It makes sense, then, that I’m struggling more and more with balancing what I call my “medical life” and my “social life.” My medical life include these visits to the hospital as well as various doctor appointments, therapy sessions, having to be turned every 2-3 hours when I’m in bed and to be given water and medications through my g-tube at certain times throughout the day and night and other such things directly pertaining to my body and health.  My social life includes just about everything else and pertains, one might say, to or more to my mind and likely my soul. 

   As I get more and more active, staying up longer in my chair and going out more and doing more things like posting here after 2 years, my medical life feels more and more of a bother, intruding on my social life.  Increasingly, I feel I’m balancing these 2 lives I have, and, increasingly, it’s a real trick. 

All of us means ALL of us

   I recently went to a talk sponsored by a student group at the colleges here.  Two things struck me when I saw the event listed.  One was that there is a disabled student group at the Claremont Colleges, which, at least in my mind, have not been known for being disability-friendly (although I have seen more ramps, automatic doors and the like installed in recent years – perhaps spurred on when a guy in a wheelchair I know sued one of the colleges the day after he graduated for being inaccessible).

   The other thing that struck me was the name of the group: the Disability Illness Difference Alliance. 

   Really?  Why is illness in there?  Haven’t I finally sloughed off the illness title, deciding that that I can stay up in my chair and that I wasn’t sick after two years of spending much of my days in bed? As I stated in a recent post, I was sick of being sick.  What’s more, isn’t the problem with being disabled is that we are seen and treated as sick, ill. What is “invalid” pronounced differently? 

   And “difference?” Come on! They might as well said “special” or “differently able” or – remember this, anyone? – “handicapable.” This group had some catching up to do.

   But maybe it’s me who needs some catching up, some shaking up in regards to the disabled and where they are or should be in society.  The talk by Lydia Brown turned out to be a much-needed reminder, if not an eye-opener, for me. 

   Ms.  Brown is a disability activist and a lawyer in Maryland who has autism.  That was a wake-up right there.  I was expecting her to be in a wheelchair or to maybe be deaf or blind.  I was expecting her to have a more obvious, physical disability (I also thought it was odd that I was the only person in a wheelchair in the room).

   In her remarks, Ms. Brown focused on disability justice, pointing out that it is different from disability rights.  Whereas disability rights is about getting laws regarding access and accommodations enacted and enforced, disability justice is about getting people with disabilities seen as equal and included as such.  Disability rights opens doors; disability justice opens minds and maybe hearts.   

   The disabled aren’t regarded as equals and are often not included and have to fight to be or make a point of being included. As Ms.  Brown pointed out, the disabled are guilty too of having this mindset, seeing the disabled or those with other disabilities as not being equal and then not including them.  I did it when I thought it odd that Ms.  Brown didn’t have a physical disability.  I do it, much to my shame, when I see people who are mentally disability and am embarrassed and think, “I’m not like them.  I’m not one of them!”

   I do this, because people often mistakenly think or assume that I’m mentally disabled, and I have to fight to show that I’m not.  I also do it because I would hate to be like that. 

   I was reflecting later on how, yes, this is what we do when people are sick.  Not only do we not want to be like them – sick – we tend to forget them, go on with our lives, leaving them behind until they get well and catch up with us. Much of this is due to not feeling well, not wanting germs to spread, etc., but there is still a psychological impact, both on those who are sick and those who are not sick. Illness is not only a bad thing, something to be avoided, something to be eradicated; it is something to be ashamed, if not guilty of.  Before two years ago, when I was far less disabled and more active, I particularly hated being sick, not just because I felt crummy but also because I was not active and felt more disabled and also forgotten, left behind, not a part of the world, much less the community.

   And, yes, this is often how I feel as a disabled person – forgotten, left behind – but the difference is I feel well, well enough to want to be part of the world, part of the community, and well enough to make noise and raise a stink, to request or demand that there be a ramp and that I can be a part. But it does get awfully tiring having to constantly raise a stink.  And what about those who can’t speak up to be a part of the world, part of or simply out in the community in whatever way they can. 

   Who am I – who are we – to think that they don’t?

The great battery scam

   On Sunday morning, I was getting ready to go to Meeting.  This is somewhat of an undertaking, to say the least, since Meeting for Worship starts at 9:30, and it takes some time to get me cleaned and dressed, up in my chair, fed, in my van and to the Meeting.  It didn’t help that I overslept 20 or 30 minutes. 

   I was pretty impressed, even amazed, when I was up in my chair, fed and ready to get in the van by about 9:15. The van just had to be taken out of the garage.  I would be just a 5 or 10 minutes late for worship.  Not too bad – although I tend to disapprove of people being tardy to meeting (even as, yes, I have always had difficulty getting to meeting by 9:30!). My attendant and I – we were hauling ass! 

   Then it happened.  My attendant went to start up the van, and it wouldn’t start up.  Because of a dead battery.  And it wasn’t the battery in the van that was dead.  It was the battery in the key. 

   The battery in the key!  There was a battery in the key?  Really? 

   Really!  Just like everything else has a battery these days.  Everything from watches to remote controls for televisions.  You can’t just wind up your watch or press a button or flip a switch to turn on the T.V. No.  Everything now is operated by and reliant on batteries, and those batteries, as is the nature of batteries, run out and have

to be replaced or charged, which, as is the nature of obtaining energy, isn’t free. In other words, it costs money.

   So I had busted my butt, not to mention my attendant’s, and gotten up for nothing.  I was going to miss worship.  Shoot! 

   Then, while I was stewing and not being Quakerly or worshipful, my attendant was making some calls – generally useless – and fiddling with the key and discovered that, lo and behold, there’s a key – an actual, old-school key – inside the key – the “fob” or whatever – that she could pull out.  She went out to the van again and – wonder of wonders – it started up with the key. 

   It turns out the battery is needed only to enable the buttons on the fob to work. And do they do much more than set off that alarm which I’ve found annoying since way before I had a fob to deal with?    I don’t know if the fob is needed to lock and unlock the van. And even if it is, it just proves my point even more.  All these batteries are a scam, something we don’t need but now can’t seem to do without and are now another way to get us to pay and pay more and more. 

   It’s enough to drive me off the grid, except that I would be in real trouble, relying so much as I do on technology, including that which now enables to get up and discover a new life after two years of learning that I can deal with and live with a new disability. 

A - sure - special show

   “Special” is indeed special.  The Netflix comedy, which premiered April 12, is, overall, quite remarkable and sort of amazing.  As a friend remarked, who knew my life would be a T.V show! 

   Not quite.  Ryan (Ryan O’Connor, who is also the writer and for whom I presume this is an autobiographical project) is able to walk, although with a significant limp, and doesn’t have a speech impediment – much in his favor – but he is disabled with Cerebral Palsy and is gay. Although far less disabled than I am or even was before two years ago, he is a disabled man, and one with unsexy C.P, making his way in the hyper-judgmental gay world and dealing with all the insecurity that entails.  Who, indeed, knew there would ever be such a show, let alone a comedy! 

   The mini-episodes, each running about 15 minutes and making for almost too easy binge-watching, are “big fun,” as my friend also said.  From what I’ve seen so far, the show manages to make some not-so-tasty medicine go down quite easily, without the sugar being too, too sweet.  There are some over-the-top, simplified scenes and characters, like the super-over-protective mother, not to mention the unbearably obnoxious boss, but this is typical in television comedies, and there really isn’t so much.  More notable are the surprisingly, even uncomfortably real scenes, such as when Ryan meets up with a sex worker, who he makes a point of telling he will “soon not pay for sex.” (I should also note that there is considerable profanity and nudity.) And the acting is sometimes not the best, but, again, it could be worse and certainly isn’t a turn-off.       

   I may want to write more after I’m done watching the series.  This is just my off-the-cuff, initial reaction and is in no way a full review. For now, at least, “Special” is definitely a show to watch – and not just because it’s remarkable, even amazing and, okay, special, that it’s on.