When I die.

I’ve watched several people I knew die in the past few years, and I’ve watched the reactions of the people around them. Which has caused me to want to post something about when I die (I am not planning on dying in the near future, I just wanted it said).

When I die, don’t feel afraid to discuss what you didn’t like about me, or what I had to say. Don’t turn me into someone perfect, someone I am not and never was, someone nobody is. Remember me as I am, not as you wish I was. Discuss the merits and problems of my ideas and try to improve upon them rather than letting them stagnate as if they have died with me. I am a human being. I am good and I am flawed, I am happy and I am angry, I am reasonable and I am unreasonable, I am right and I am wrong. I try, more than almost anything else, to do the right thing, that does not mean I always succeed.

When I remember people who have died, I remember them the same way I remember people who are living. Death doesn’t make me cut off some bits of them, exaggerate other bits, and fabricate bits that never existed. Don’t make life difficult for people who, like me, will remember me in death the way they experienced me in life. Don’t put forth an idealized (or for that matter demonized) version of me and make people afraid to remember the real me.

If you believe in heaven, and believe that I have made it there, don’t depict me as “happier now” because I’m not disabled anymore. I once read about a deaf girl who was told that she would love heaven because she would be able to hear. She replied, “In heaven, God will sign.” Any time I try to imagine heaven I come up with some equivalent to that, rather than a sense that I will be made into an unrecognizable non-autistic mold. It is humans who think that the diversity of the way we were created is a defect and that God needs to make us all identical for us to be equal. It is also humans who think “Better dead than disabled.”

But theological speculation aside, please remember me the way you thought of me when I was alive. I find it disturbing how the memory of people I knew and cared about is turned into a monument to people who didn’t exist, not as I knew them, not as the same people spoke to and about them when they were alive. And for me, the distortions designed to evoke excessive unmarred beauty are ugly and the intact truth about people is beautiful.

It could happen to many of us.

‘It Could Happen To Many Of Us’ is the title of an article at Ragged Edge about a guy diagnosed with bipolar, who wasn’t a terrorist, but got mistaken for one, and was shot and killed. I read it, and I’m once again aware that I’m one of the “many of us”. My repeated near-misses with law enforcement, all outside of such volatile settings as airplanes, have made me cautious about leaving the house on my own.

This past year, I decided that it was a pleasant, slightly-drizzling day, and that I would wait outside for my staff to come. I took my cane, rather than my wheelchair, because it was only a short distance. I didn’t take my keyboard because I didn’t want it to get wet. I sat down and enjoyed the day. Soon, though, people were walking up to me and asking me if I was okay. I nodded, and they went away. But then the police came. They also wanted to know what I was doing there. Fortunately, the second policeman to arrive knew me, and my staff drove up while they were still questioning me.

But this wasn’t the first time, or even the last time, that my appearance (autistic, ticcy, generally unusual) has aroused “concern” among good citizens.

In my many encounters with the police, I have sometimes been viewed as a potential threat, who needed to be locked up for the protection of other people (even though I was not hurting anyone). Other times, I have been viewed as a threat to my own safety (because I dared to leave the house looking like I look — should have known better, apparently), who needed to be locked up for my own protection. (Which is why I am unfortunately waiting for the above story to be used as an excuse for forced drugging rather than a re-evaluation of prejudices.)

I have not yet been viewed as a potential terrorist (except perhaps by Lenny Schafer). But given the descriptions of potential terrorists (who are to be shot in the head, apparently) that are being circulated, it would just take being in the wrong place at the wrong time, given that the descriptions would pick up many autistic people and people with other neurological oddities. Which is why I continue to never leave the house alone, despite being very fond of taking walks and exploring places, and why I dread air travel (in which, for an inspection on a recent flight, I was forcibly separated from the support staff who could explain my behavior to anyone) altogether.