First I should say I make mistakes. I once believed in ardor and imagined it was enough. Loving books was enough. Greeting each day with my love of fool’s gold was enough. Pity the man or woman who believed too much in art.
“Blessed is he who expects nothing, for he shall never be disappointed.”
― Alexander Pope
As I say, I make mistakes. I have expected quite the opposite of nothing. Ardor means at the very least the Jeffersonian pursuit of happiness. That alone isn’t much of a mistake, its wired into every infant. Even the nematode worm has something like it. No, my ardor was gangrenous from the start. Frankly, I believed that writing about disabiity taken as phenomenology, taken as epistemic process, understood as a profoundly beautiful way of being would gain attention. I do not mean I thought I would win the Pulitzer Prize or be vaulted into the realm of celebrity writers—not at all—but I did imagine that Americans would come to see disability as a significant part of diversity and this has not happened as much as I’d hoped. Ardor wasn’t enough.
There are tremendous disabled writers in the United States and around the world and we can’t get on the main stage of literary conferences. We’re not routinely invited to speak at festivals devoted to books. We remain curiosities. No one should make the mistake of thinking poetry would make them famous or rich but back in 1998 when I published my first memoir “Planet of the Blind” to some acclaim I let myself believe that mainstream literature was finally ready to hear what the disabled had to say.
I was wrong about that and though I don’t know what I mean by “mainstream publishing” I know what its effects are, the soul crushing novels by able bodied writers that employ disabled characters as bleached plot devices—books both popular and utterly creepy. Books that do lasting damage to real disabled people. Anthony Doerr’s wholly false blind teenaged girl who’s so helpless she must be bathed by her father; Jo Jo Moyes; and just this week a new novel depicting a man who’s face becomes paralyzed which, presto, means he goes nuts—two misreperesntations in one.
I admit it: I thought that by the time I was in my sixties I’d see disability on the stage with people of color, queer writers, writers who hail from the far ends of the earth, as folks who can speak for themselves, have tremendous talent, and know where more than a few of the keys to the mind-body schism are greased.
Yes I was wrong.
“A man should never be ashamed to own that he has been in the wrong, which is but saying in other words that he is wiser today than he was yesterday.”
― Alexander Pope
If I am wiser it is due to comic irony. I look back on my past and say “oh, don’t do it!”
Don’t go on the Oprah Winfrey show where she’ll ask you if you know what she looks like.
Don’t go to the Associated Writing Programs conferences where you’ll hear able bodied writers talk endlessly about how poetry can heal you from affliction—as if being disabled is a failure of imagination.
Don’t take academic jobs believing you will have a great impact. You’ll have some, but not much. You might succeed in getting them to put in an accessible bathroom on the third floor of the English building.
Know as Alexandar Pope did that your days will be filled with phsycal obstacles and terrible whanging headaches and that work, earnest, probative, thoughtful work is all we can do in this life. It is the only thing we can guarantee.
“Act well your part; there all the honour lies.”
― Alexander Pope, An Essay on Man