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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.


Patti said...

You put into words exactly what I am feeling today. I'm sorry you're going through some of the same feelings also, but know this: you've been given a gift of writing and eloquently putting what others including me are going through. You've given words to my feelings that I otherwise would've had a hard time pinpointing. I have been overwhelmed lately with situations that have arisen because I am disabled in this world. Although I am not glad for you to have these feelings I just want to thank you for sharing with others.

Anonymous said...

Yep, I get it completely! I have lived the crippled life as a wheelchair user for about 55 years, and still nothing makes sense regarding society.

I have concluded it goes much deeper and perhaps all the way to 'Natural' law. We humans instinctively a few things: It's wrong to kill. It's right to love. We instinctively feel compassion. We feel fear. We feel the need to couple.

Maybe, just maybe, hidden in 'Nature's' law is something that makes able-bodied people react the way they do. I'm getting old and still searching.

I eagerly await your book.

AL in Texas.

Stephen said...

The future -- probably less than 50 years from now -- of medical science holds the very real possibility that people will be able to replace or regenerate worn out body parts. If this becomes commonplace than conditions like disability, especially those that will not be remediable by such technologies, will become even more stigmatized than they are now.

Bill keeps hammering across the point that disability is a societal construct more so than it is a medical one. It is and, well, it isn't. If you've been living with a disability for a long time (I recently hit the 30 year mark), and especially if you were born with a disability, then the logic of the societal model makes complete sense. For those, though, with a later-in-life acquired disability, it is more likely to be experienced as a medical condition *forever* needing to be cured.

The prevailing mindset now and I suspect into the future is that a disabled body is a failed body. It is to be fixed or discarded. The notion of disability pride, which implies inspirational qualities, must strike the able-bodied as perverse.

william Peace said...

Stephen, Your comment is hard to disentangle. Parts are spot on others not so much. In disagreement, I have much less belief in medical progress. Regardless, you are correct stigma will get worse rather than better in the future. On disability and a social construct, yes we long term people get this. The vast majority of people with no exposure to disability do not. This too will get worse given the abysmal state of modern day rehab that undermines disability culture and embraces a medical model. I see contemporary SCI being ruthlessly exploited. No idea how to get people to understand disability pride. Doubt that will ever happen. Good lord this is disjointed cranky reply. Not what I had in mind. Tired from my long drive and not looking to the dog's last walk in a few hours.

william Peace said...

Stephen. Rethinking what I wrote in reply to you. For disability to be perceived as a social problem requires a large intellectual leap in logic. One must reject all that was absorbed growing up in terms of disability. This is very difficult. Most cannot or will not do it.

Anonymous said...

can relate to many of the points you make. I experience a lot of melancholy, and it usually includes thoughts about my disability. Then again, when it doesn't, it's harder to grasp. It's common knowledge that disability sucks, but it's not so common knowledge tha tlife in general sucks at times.

I agree with Stephen that disability will become more stigmatized once medical technology evolves tot he point of being able to cure it. I have sometiems discussed its implications with my non-disabled husband, and he says it would be great if technology could cure disability (physical and mental). He even went so far as to say that,s uppose you were relatively short and you wanted to fly an airplane, technology that could make you taller would be acceptable becaus eit makes you happier. Then again, I also read a book about people suffering from psychosis and how litel atitention was pid to the existential nature of their illness. They were medicated into emotional stability ad released. Will we end up with a society that demands universal individual and social stability?

william Peace said...

Astrid, What most people without a disability or those who have not been exposed to disability do not begin to grasp is that the prime problem we have is the social response to our presence. I am not dismissing the fact disability sucks. It does for sure. So what. Get on with life and all the good things that are possible. What I rail against are the needless social obstacles and stigma created by typical others. Our physical and social environment are designed for bipedal with typical cognition.
On cure: I ave taken severe abuse from others when I take the cure industry to task. I repeatedly acknowledge cure for any condition is a good thing. But what is the social cost? Most efforts to raise money for cure are based on pity. I do not want to be pitied and used. I find the efforts on cure are based on antiquated ideas of disability. Hence the line "piss on pity". Technology and cures are of no interest to me. I worry only about civil rights and equality. And believe me I am very much a minority voice. In fact I hesitate to post these words as I worry I will be taken to task which wears on me.

Middle Child said...

This excellent article from the Australian (paper) is one of the best I have read on the subject of melancholia

"Sadness has a direct line to the soul - OURS are ominous times"...."But there is another threat, perhaps as dangerous: we are eradicating a cultural force, the muse behind much art and poetry and music. We are annihilating melancholia."