I wrote this exactly one year ago.

Superman died yesterday. I'm sure that's what a lot of ironic headlines will say this week, that the guy who brought Superman back to the screen, the vital tall gorgeous actor Christopher Reeve, so tragically struck down and ya-ta-ta, ya-ta-ta.

Chris Reeve was special to me, not, perhaps for the reasons you might think. Not because he became a "spokesman for the disabled" a legend speaking for those who could not walk. In fact, I got mad as hell at Reeve after his accident. I wrote to him several times in those first few months, remembering friends who'd been hospitalized and forgotten about during the worst few weeks of their accidents. No I didn't know the man or his wife or family, but I wrote several "Dear Chris and Dana" letters, just to remind them that regular people were thinking of them, and would not forget them when the tv cameras and paparazzi got bored; that some of us understood what they were in for long term. Chris Reeve was only six months older than me, and had been one of my heroes for a while. Not just because when he said it on film I believed that Superman stood for "truth, justice and the American way". Not just because he made me understand why Lois might not get that her doofus co-worker was the Man of Steel. But also because when Chris was down in Santiago, Chile once, he risked him life to speak out against the Pinochet regime . And also because horse-riding, sailing, flying, skiing, handsome tall blue-eyed actor boy risked taking parts in films like "The Bostonians" where he played such a wretched man, and "Deathtrap" when you know he could have been pretty-boy action hero Reeve all along. And often was, but still….I liked that an actor associated with such a heroic profile would take a minor part just to appear in Merchant/Ivory's "Remains of the Day".

But he became my hero when he lived his post-accident life publicly. He certainly didn't have to and I'm sure there are folks who think he shouldn't have; he should have quietly disappeared because what happened to him was so awful. And depressing. And sad. How a guy that. well, that whatever, was reliant on a respirator, "confined to a wheelchair."

Why was I mad at Reeve? Because I sent five letters to him and months later got back five identical solicitation letters for his foundation. No one cross-checked. (I never expected a response, but this one was unpleasant.) Because he focused so much - everything - on the fight to walk again, and nothing that I could see on access for wheelchair users, and other folks with serious disabilities, on coping and making life better all the while working toward hope for the cure. Because when he appeared at the Oscars, a little less than a year after his riding accident, he appeared magically on stage, poof. All the award winners walked up the stairs in the front, but no, Reeve just poofed. Because he was in a power wheelchair and wheelchairs come out form the back of the stage. Because while Itzhak Perlman kicks ass about accessible auditoriums, I never heard Reeve complain once about the way disabled actors were poofed onto the stage like David Copperfield just put 'em there. I wanted him to fight for visibility, I wanted him to fight for more than pipe dreams (my former orthopedist in Seattle is working on regrowth of spines and on artificial disks and on viruses that grow bone and they're still pipe dreams). I can't possibly address what it's like to be paralyzed, I cannot know; I just wanted him to use some of that power to address reality. About disabled actors and Hollywood and attitudes and assumptions about appearance. About access to buildings. About barriers and all that jazz. And about how he really got to that stage – by van, through alleys smelling of trash and worse, back stage through ill-lit corridors not meant for wheelchairs, over piles of crap and boards and nails and well, treated like a second class citizen only to appear. Poof.

And yet, and yet, and yet….

Reeve was public about his life as a quadriplegic. He didn't hide the hospitalizations, he wrote about the horrific depression after the accident when he had to consciously decide to live. He used a respirator on all those talk shows he did, all those interviews. He recently appeared with a shaved head; Superman, with that gorgeous black hair! Bald! And he didn't hide. He used his fame, his clout as an actor, and as a nice guy to force people to listen to him about things like stem cell research, and spinal cord injury and the burdens it places on family. He made people aware and he used his friends, who willingly came to help out. And rah for that. No one would have blamed Chris and Dana if they'd withdrawn from public life and spent these years with each other. Instead, he went on showing himself to people, letting his body be an experiment for others who didn't have the piles of money he had. And since I didn't know what he lived with, except from friends who were quads, and I had several, especially when I lived in Berkeley and worked at CIL, well, how the hell could I criticize? There's no question in my mind that the work is needed. If Reeve has moved stem cell research one day closer to solving my friends' problems, if his speaking out means that folks I know with MS, and lupus, and RA and spinal cord injuries and you-name-it, could be helped then he done good. But…but "cure" can deny reality, and there are thousands and thousands of us who need to live and deal with the reality of our lives, every damn second of every damn day. And he had the clout to do as much In the real world than in the futuristic world he invested in.

Chris Reeve's nerve may be apparent to folks who saw him do all these action hero things. A word I despise in discussing the lives of people with disabilities is the word "brave". Because most of us are not brave, we just go on trying to be whatever we can be and it denies us our humanity to be seen as saintly or more than fucking human. I think Chris Reeve was brave to discuss bedsores and autonomic dysreflexia. I think he was brave to chance long tapings of interviews under hot lights (which can affect a quadriplegic) and the constant sound of a respirator. I think he was brave to go out there after everyone remembered how he looked in his blue suit, red cape with the curl on his forehead. And while I was peeved at him for his choices, they were his choices and he made them with all his estimable brains and open heart. And I hate that he died from a very quad thing, a pressure sore, a bedsore that led to an infection that led to heart failure at the age of 52. I hate it. And I shall miss him very very much.