I have a friend in San Francisco with a progressive disability. Timing is everything, they say, and this applies to his condition. With my disability, I have the daily illusion of constancy. With his, no such delusion is possible. Things change for…let us call him John…at a noticeable clip. Perhaps not daily, but possibly weekly, and more certainly by the month. Still, my own disabled condition is worsening, if nothing else with age. And whatever the reality, there is the fear. How much longer can I do this particular motion, perform that routine household chore? How safe am I alone?
I have a need to help John, or think I do. So, I have offered some advice here and there. But as with teaching, it is the student who instructs. And I’ve learned a lot from sharing my experience with John.
He lives in a retirement community. That is to say, a relatively posh San Francisco condo development for older people. There’s food, cleaning, assistance. A program of outings. Some transportation. It’s all carefully defined. Residents are expected to do certain things for themselves – and to hire outside help for the rest. And so it has to be. Any community needs rules. The problem is, John is losing mobility at a steady clip. It’s hard for him to plan for some future, let alone his own days.
As for the latter, he is up against fear. I don’t blame him. He isn’t used to this. One day he was a high-powered consultant, and the next he was trying to fill his time in a studio apartment…his professional past abandoned. It has been a big shift for him to brave San Francisco streets in an electric wheelchair. And ‘brave’ is the operative word. It’s scary. Even I can feel a San Francisco sidewalk tilting the wrong way and get that sense of losing control, being a bit too far out on the high wire…the proverbial safety net uncertain.
We are at this stage, John and I, of discussing travel. Nothing exotic, just me recommending a day or two in the California mountains. He’s afraid. He has issues. Getting to the toilet is a challenge. Getting there on time is sometimes an insurmountable challenge. Under these circumstances, no wonder he is leery of traveling to an unknown spot. Yes, it may be stultifying to be stuck in his San Francisco studio, but the alternative…soiling oneself like a baby, is even worse far from home.
Thing is, I’ve been through all this. Every year or two my bowels mis-function…and the experience is humiliating, maddening. Yet the fear of it is worse.
John is a private guy, and so am I, which makes this topic difficult to broach. Yet I’ve done so with him, made some headway. Though what I’ve learned in the process is probably more valuable than anything John has picked up.
I’ve come to understand something essential about community. Healthcare. And the general decline of our hyper-individualistic society.
There are ways to live with limited control of body functions. Actually, they are pretty simple and surprisingly effective. Regular diet. Regular everything. What’s interesting is how I learned this myself.
Some of my know-how derives from six months in a Los Angeles hospital – a public facility. The rest comes from four years of outpatient treatment under Britain’s National Health Service, the pre-Thatcher golden era of the NHS, I now understand. And the final bit comes from a community organization in Berkeley in the 1970s. The pioneering Center for Independent Living, that provided all sorts of advice and support for a new generation of disabled people living on their own (often, for the first time).
Today, John lives in a facility that is geared to the wealthy and privileged. In San Francisco, now the most expensive city in the nation, one can easily invest seven figures in his type of accommodation. I don’t know the details, and would never ask, but the specific numbers don’t matter. What’s important is how rich his circumstances seem in one dimension, and how poor in another.
John needs help and advice about having a life in the community. He needs support in facing fear. His medical condition is, let us be plain, hopeless. But his life isn’t hopeless, and with the right sort of contacts his existence wouldn’t feel hopeless.
I’m struck by the contrast. The best, most expensive medical care…the finest accommodation for people who are infirm. And yet what John needs isn’t available. He’s too new to disability to understand this. But I’m not new to the experience, and it’s all too clear. What he needs doesn’t cost much money. But it does have to spring from the community. Which is one of the myriad problems associated with America’s current economic schism. We’re losing touch with each other, and in the most detrimental ways.
What is ‘public health?’ Is it something for poor people? Maybe not. Health is a shared concern. It’s a community project. And it can cost little or nothing. Health know-how, do’s and don’ts, these grow out of shared experience.
I honestly think that many disabled people sleeping rough on the streets have had better health advice than John. A low-income person in a wheelchair can learn a lot from seeing a physical rehab nurse at San Francisco General Hospital. How to prevent skin breakdowns. Keep regular. Maintain muscle strength. Care for the heart. Not to mention advice from a social worker. Which buses are truly wheelchair accessible. How to get home help. And so on.
Even in this, our Gilded Age, there’s no buying good health. And in the big picture, sometimes there’s no buying good health care.