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Saturday, January 4, 2014

Frigid Travel: Staying Warm and Safe

Quite some time ago I made plans to meet with Jennifer Johannesen this weekend in Niagara Falls. Two things could be accomplished: first, I went to Niagara Falls for the first time with my son last summer and thought I visited at the wrong time of year. The Falls and Victoria Park would be spectacular in the winter. I knew I wanted to return. Second, I could see Jennifer whose writing you can read at:  Other variables came into play. I knew if we did not meet the next opportunity might not be until next May. I also firmly believe in a video project she is undertaking and because of this considered this weekend a command performance.  Screw the snow storm and dire forecast. I was going to Niagara Falls.

How does a paralyzed man prepare for such a trip? Actually the question should be how does a paralyzed guy safely and carefully prepare for such a trip. Basic logic. Watch the forecast carefully and improvise at a moments notice. I planned to leave well before sunrise on Friday for the six hour drive. No chance that will work. I decide to leave on Thursday morning before the storm hits and drive as far north and mostly west as I can before dark or snow hits. I head directly into the storm.  I pack smartly. Three pairs of gloves with glove liners. A spectacularly warm jacket I got from Canadian tire. A hunting jacket replete with pockets for bullets. A back up down bubble jacket. Two strips of rubber in case I get stuck in snow. Two blankets for Kate and emergency blanket. A good shovel and car brush. Warm clothes--multiple sets of warm cloths. Nothing is taken for chance. Remember I was a Boy Scout leader! I am prepared.

I plan to go as far as Buffalo but know I will stop well before if the roads get bad. Buffalo is ambitious and before I hit Syracuse I know I will never make it.  I aim for Syracuse. The drive is uneventful until the last 30 minutes. The forecasters got it right. Snow started to fall heavily and the roads were getting bad. Kate and I make it to the lovely Red Roof Inn in Syracuse--my stomping grounds. I hunker down and look outside. It is gorgeous outside. A winter wonderland.

Friday I get up early turn on television. At least a foot of snow fell and it is cold--dangerous cold. It is -8 f. and the windchill is about -30 f. My kind of cold. This is the sort of cold I love. My wheelchair lets me know it. The rear wheels quick release freeze and the metal of the wheelchair itself krinks and crackles in only a way only I am aware of. Here is how I looked before I went out.

I have my warmest wool hat on and feel like a marshmallow man. I am ready. Before I went to bed the night before I brushed off the car and still needed 90 minute to achieve the blow:

I get in the car heading to Niagara Falls by 8AM. Pulled into Niagara Falls by lunchtime happy, hungry, and tired. I ate lunch, Jennifer interviewed me and we went out to dinner in the casino complex. Yikes, a casino is license to print money.  I thought the odds of winning at the horse track were bad. At the casino the odds are worse--much worse. I also saw lots of men my age walking around with tall slender well made up young women. No idea how to wrap my head around that! I am happily middle aged and like women my age. No skirt chasing after young women for this old fart.

Today was tourist day. Walked around Victoria Park with Kate and went to a local rink where I watched some kids play hockey. Man, I miss hockey. My heart has just not been into it this season. Meeting up later with my friend Barb Farlow and her clan. All in all a great trip. Though I will confess I am bit sore. Being active in cold I find very tiring.  Head home tomorrow. Travel log over.

Wednesday, January 1, 2014

Melancholy: A Post for My Good Friend Stephen Kuusisto

Melancholy is defined as a pensive feeling of sadness that has no identifiable cause or reason.  The Greeks referred to melancholy as the black bile. A clinical psychiatrist would consider melancholy to be a mood disorder.  When I think about melancholy, and worse experience it, I think of my ex-wife who was an artist. When we met I knew nothing about art. During our marriage I learned a lot. I recall one image in particular by Albrecht Durer.

I saw the above once somewhere in New York City decades ago. I think it was at the New York Public Library. I could be wrong. I looked at this for a very long time. The sadness oozed out of the image and caused me to experience emotional distress. Drurer must have known melancholy intimately. I suspect every human being has had bouts of melancholy. Robert Burton wrote the first known text on melancholy, Anatomy of Melancholy, in 1621. The book was supposed to be a medical text. Instead it is a fine piece of literature; however, it is not the best book to read when you are alone on New Year's Eve--a New Year's Eve that was preceded by a horrible Thanksgiving and Christmas. Yet famous lines such as "There is no such thing as happiness, only lesser shades of melancholy" struck a chord with me.

I suspect melancholy fits prominently in the lives of all people with a disability. A normal existence, to be ordinary, is virtually impossible. Forget about the ADA. Forget about the past 40 years of progressive legislation designed to empower people with a disability. Disability as tragedy is a narrative that is stunningly persistent.  Disability explains all. If I succeed I overcame my disability. If I fail it is understandable because I have a disability. If I am happy it is because I have character and did not let disability hold me back. If I am sad, well, who wouldn't be sad after paralysis. If in love the woman I am with is a special person (almost a saint) able to overlook my disability. If I am alone well who can expect a woman to marry a crippled man. If I publish an article in a peer reviewed journal I am praised for my unique insights into disability. If I have an article rejected well I am too strident and disability clouds my view.  I could go on but I think my point is clear. Everything I do begins and ends with disability. This is why we people with a disability experience melancholy. This is why we people with a disability were once known to have a "cripple's disposition".  This is why I am often charged with being "bitter" about my disability or that I have a chip on my shoulder. When I hear this I want to bang my head against the wall in frustration or humorously note that I have a boulder on my shoulder.  Warning for my crippled brethren: stating you have a "boulder on your shoulder" after a few stiff drinks is not easy.

The divide between my life as a crippled man and the life of a man my age who is bipedal, typical if you will, is immense. The divide is much less physical than it is cultural. My existence is less valuable. The respect I garner is negligible. My competence is always called into question. My abilities are less. All people see are what I cannot do. I doubt many bipedal men are told how remarkable they are when they get in and out of their car. In short,  I have a social disease and I am not talking about an STD.

The disability divide to me is pretty basic. All I know and care about is what I can do. All I think about is what I have done and will do in the future. I know only how to drive forward through good and bad.  I endure and adapt. How I do that has varied over my life span. And here I sit 35+ years post paralysis and remain eternally perplexed why others, bipedal typical others, cannot grasp this most basic concept.  I am a fucking human being. I eat, piss, and shit. I like sex. I can fall in love. I can have my heart broken. I can do my job. I can teach. I can drive. I can be happy. I can be morose. I can be normal if only society would let me. Instead I remain a spectacle. I am a problem. Equal access is a burden--a costly burden. The ADA is an unfunded mandate!  Forget social supports that make life possible. That would imply people like me could have a life when we all know disability is a fate worse than death. Worse, disability from an ableist perspective is an individual problem. Civil rights never enters the framework. Again, this makes me want to bang my head against a wall in frustration. It also makes me think back to my testimony in Boston against assisted suicide legislation. A very nice man in support of suicide kept trying to engage me. His son was paralyzed. He understood disability. I know what it is like. He told me his paralyzed son needed to have the choice and control over the circumstances of his death. I told this man end of life issue are a lot more complex and that choices are framed in ways that are deadly. I mentioned Tim Bowers. He did not hear a word. He pointed to a copy of the proposed assisted suicide legislation and said disability had nothing to with it. He fiercely tapped a copy of the bill and highlighted in yellow was the following "A person may not qualify [for assisted suicide] solely because of age or disability." This was proof positive in his estimation all my concerns and those presented by disability rights activists had no foundation in fact.  How I wish this were true. How I wish bias and bigotry could be eliminated with the swoop of a pen and in a single sentence no less. This exchange is the cause of my New Year's Day melancholy. If the parent of a paralyzed man does not get it, if this man, a doctor no less, is so oblivious hope for the future is bleak. Like it or lump I will never be normal. Maybe this is not such a bad thing. Hence my screen saver these days is below.