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.