I am in the queue at Peets, wondering why, vaguely considering the possibility of being elsewhere when the man behind me has the temerity to speak. He asks me if I ever run over people’s toes. Now and then, I tell him, miffed at the question. What he says is slithering with perspicacity, after all. The man is all smiles as he adds ‘it’s a good way to meet people.’ He has substantial body odor about him, nothing oppressive. And in another context one would hardly notice. But context is everything. I am in my own context this morning, and it is powerful. Mine is a somewhat anxious context, origins unknown. But I accept it. All moods lead somewhere, it seems. Also, my recent discovery, that no mood lasts forever. Therefore, do not send to know…well, much of anything. Just be. Much like the man behind me in the queue. There is something rather louche about him. Not in the gender sense, but some other indefinable. And I want to get away for whatever reason, not that one needs one. I am already away, conveniently. The barista knows my order, which is rather a complex one, and has gotten every detail straight, but for the presumption that I want nonfat, rather than low-fat, milk. Never mind. He is in the ballpark, as it were, and for this I am grateful.
When my mocha arrives, the only thing truly gratifying about it is the caffeine. The noise of Peets now penetrates like a rusty nail. Downright cacophonous, it is, and the nail-pounding intensity of it is most unwanted. The brew is hot, hotter than usual, and I drink it as quickly as good sense allows.
I am actually relieved to be out the door and on my way home. Rolling along the side of Peets, having stopped to chat with a member of the chorus, I find someone familiar in a doorway, lounging at the base of stairs leading to offices. It is the man from the Peets queue. He could almost pass, I decide, attired as he is in jeans and sport shirt, a Bluetooth receiver in one ear. Still, his manner of lounging in a doorway suggests a familiarity with the streets. He is not quite tucked and crisp and washed, this man, having fallen somewhat off the social ladder, and now making slightly inappropriate jokes to cripples about wheeling over toes and meeting strangers. And if my response is not the height of finickiness, what is?
Because this man could be the next Kerouac. Or the last one. Not fitting in perfectly to Menlo Park society is hardly a cause for concern. In fact, it could spark a certain affinity between the two of us, this man and I. In truth, I do not fit in either. Despite my rather strenuous efforts. I am not fit enough to fit in the eyes of some. How people view me, all the myriad ways, this is something of a mystery, a self-created one. As for this man lounging in a Menlo Park doorway, Laurie Lee probably did much the same on his way across Spain. The truth is I am afraid to interact with those who don’t have things together, people who seem on the margins. Am I afraid of becoming part of this marginalia myself? Or is it just a general fear of those without boundaries? I feel vulnerable wandering about the streets. It is no accident that I hang out in a suburb favored by the haute bourgeoisie. Safe. Admittedly dull. But safe.
While not immune, of course. Rolling down Santa Cruz Ave. I speed past sidewalk diners in a restaurant. A woman seated at a table across from a man is smiling and struggling at the same time. Her pleasure seems to emerge from a depth of pain. As though she has waited a long time for such a moment of expression. I wonder if she and the man opposite are on a first date, perhaps having met online. He seems neutral, unmoved. All of this flashing by me as I roll past them in my wheelchair. And I could have this wrong, all of it, my fleeting impression. But I know that sometimes people must pass a long distance before arriving in themselves. And there is nothing wrong with it, any of it. And one should not be afraid.
* * *
Pay attention to what happens and when, because there is a mystery to timing…and often a message. So Bing, one of the prime players in Team Filipina, is just wandering out the door. Why not, her work being over? I am dressed, including my leg brace, talcum powder on my overused butt, and so on. Except for a few last-minute words, which I find profoundly disturbing. We chat, Bing and I do, and in the general course of things she mentions that a couple of her fingers have gone numb. She shrugs. Bing and her roommates moved recently, packing and carrying boxes from one apartment to another. Heavy, she says. Her shoulder aches. Does she have health insurance, I ask? I know the answer. I also know what repetitive strains can do to what those in the physical medicine world call upper extremities. Be careful, I tell her.
Fortunately, 20 minutes later, my time on the rowing machine is cut short by my swelling bladder, which has me back at my PC and doing what little I can. I print off a couple of pages about carpal tunnel, its symptoms and remedies. See a doctor, I add. Easy for me to say. Much harder for me to do a damn thing about it. Although I do scratch my brain. My dermatologist neighbor upstairs? Could he take a look? No, for many reasons, the most obvious one being the gulf between epidermis and body mechanics. Bing deserves better. We all deserve better.
So, back to timing. Synchronicity, for want of a better word. At the very moment that I am printing what I can find of medical advice for Bing, the phone is ringing for me. My 8:30 AM meeting with my publicist. Doesn’t that sound impressive? At least, it sounds busy. It even sounds vaguely affluent, as though somewhere the funds exist to pay a human being for promotion. Way cool. I must be one important writer guy. And what the publicist wants to know approaches things from the opposite perspective. What is important to this putative writer guy? If I was to begin writing the odd journalistic feature here and there, what would I write about? Me, of course. I want to tell her this, but the answer would hardly be helpful. What do I want to write about?
The disabled experience, I want to say. Well, what experience is that? Since there is no single one. And what is shared…well, it is elusive, but intriguing. And what is there to say about other disabled people and what they, or we, experience? Oh, I know this is a terribly profound question. But for the time being it is as mundane as my morning one-hour-a-day helper not being able to get medical attention in this land of plenty. It is the absurdity of my anti-fungus toe ointment, a prescribed but generic remedy which during a few transitional days after Marlou’s death was revealed…the health insurance veil of Maya temporarily drawn back…to cost $80. I am insured. Bing isn’t. And the idea regularly promoted upon the land, principally by the likes of spoiled billionaire brats such as the Koch brothers who are so eminently proud of their $300 million inheritance…anyway the idea is that the members of Team Filipina are feckless and insufficiently entrepreneurial to create their own health insurance. Which brings me back to the contemporary ‘disabled experience.’
Yes, let’s ho
ld forth on the disabled experience. What the fuck do I know about it, anyway? I mean there are my own reflections and challenges, inner and outer, but something horribly invisible must be happening out in the larger world. I am thinking of quadriplegic life today. Surely the culture of independent living, of disabled people getting into their own homes, hiring their own staffs, managing their own lives…all this must have altered dramatically. How do such people live? Where do they live today? Even in Berkeley where the movement caught hold 40 years ago, even in those days, existing on public support was extremely challenging. Whatever happened to the quads, or their successors, who proudly and mostly happily found their way to independence? Simply from the dimension of medical insurance, California is witnessing the collapse of the state health plan for the indigent. So what to write about? Or in terms of the publicist, talk about in promoting my book?
Something to think about: the brevity and lightness of my involvement in this thing called the Independent Living Movement. In my 18-month stint at Berkeley’s Center for Independent Living, I only wanted out of the place. I saw it at best as a stepping stone. And I wanted to step as quickly as possible. Few around me shared that perspective. I never fit in. Still, I did my best. And in a general way the value of what transpired in that era remains all around me. It is a fact that a disabled advocacy legal team had to sue Caltrain in the mid-1990s to make the system wheelchair-accessible.
No, I wasn’t much of a family member in the Berkeley disabled community of the 1970s. An outsider, such is the writer’s chronic state. Not to worry. What I want to talk about is…what others know better. Where are California’s severely disabled people? Let’s find out. How do they live? What are their lives like? Let’s get a look at this era of skewed wealth and widening social divide. Maybe this is something I can do. Asking the question. Have California’s disabled, the severely disabled, fallen so far in socioeconomic status that they have become invisible? I am lucky, that is the thing. I am lucky to have a story to tell and lucky enough to tell it.