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Sunday, December 7, 2014

Home, Society and Exclusion

Last Friday night I went to a Christmas tree lighting ceremony. It was mercifully short. It was a typical Central New York small town affair. There were gaggles of teenagers running around. The small crowd was dominated by mothers and fathers with little children, many being carried or in strollers. Everyone was congregated in one area. All the town shops were open. High school and middle school kids were selling a wide array of over priced goods. This is not a critique: as a parent I helped my son sell plenty of popcorn, Christmas wreaths, manure, and wrapping paper in support of his school or Boy Scout and Cub Scout activities. I kept my wallet firmly in my pocket, head down and Kate close by my side. One and all appeared to be having a good time. I was miserable. Really truly unhappy. I was not miserable at the time. Sure I was a little cold and wet but was happy to see two close friends. We watched the tree lit up from afar. We chatted and slogged through a crowd to get to my car. All in all a pleasant evening.

Like many, I struggle during the holiday season with depression. For weeks I have been quietly unhappy. I have no reason to be unhappy. I have a lovely little place to live. My neighbors are friendly and kind. I know most of the neighborhood dogs. There is a chocolate lab named Laker that reminds me of my old yellow lab Burt. Laker is dumb as a post just like Burt. Laker is also loyal in the extreme. I love my job. I have outstanding under graduate students and fascinating graduate students. I have the support of my peers at work. The university where I work is an outstanding university. I have a small but tight knit number of friends who live nearby. I go out on a regular basis and have shared many fine meals with friends. I have thought provoking discussions with my colleagues and students. And yet I am miserable. I chalk this up to the season of cheer. I work hard at convincing myself I should be cheery. This effort rarely works. I bury myself in work and books and ethical conundrums with no solutions. I have cleaned my house today to a high shine. I vacuum daily and polished my kitchen floor before sunrise. All this provides relief but not a cure to the misery in my soul.

I was awake most of the night lost in thought. My brain would not turn off. What is wrong with me? Why can't I be happy like everyone else? Why can't I be content? I gave up the pretense of sleep at 4AM. A gorgeous sunrise lifted my spirits a little.

Along with this lift in mood I made connection via a book I recently read, two short essays, and of all places a long thread on Facebook. Essentially the proverbial light bulb went off in my mind. I realized I have no home. I had a loving home as a child. I was blessed with ideal parents. The home I grew up in felt real. In fact I still have a deep connection to the house on Rich Bell Close. Yet the notion of home has slipped away from me as my body became increasingly dysfunctional. Another variable is that I never expected to live an adult life hence I did not think about the concept of home very much. Fast forward a few decades and here I sit a middle aged man and come to the harsh realization I have no place to go that makes me feel good. There is not at this time a physical or social environment that makes me relax and feel at ease. I have no sense of home. I do not care about the house where I raised my son. I do not care about the place I reside. I do not care about Hofstra or Columbia University where I spent my youth and early adult life. Worse, I have almost no connection with others. By connection I mean a deep bond that defies logic and enables one to share deep inner thoughts. What is wrong with me? Where have I failed? Why am I alone? Surely the fault lies within me. Maybe not. I made a connection that I think enlightens me and I suspect many others with an atypical body.

The connections I have made are as follows:

First I read Lenny Davis book The End of Normal in which he discusses biopolitics or biocultures defined as "the study of the scientificized and medicalized body in history, culture and politics". This resonated with me in that it sought to undermine something I know all too well--disability is socially constructed and as Robert Murphy liked to joke disability is a social disease. Second, I read a post at Musings of An Angry Womyn entitled "I have No Refuge". Link: This short essay really struck a cord with me. Third, I read a post by Stephen Kuusisto at his consistently thought provoking blog Planet of the Blind entitled "Normal". Kuusisto referenced Davis book and railed against "the tyranny of industrial normal" and speculated we must insist on ending this pejorative construction. Link: Fourth, my experience at the Christmas tree light ceremony in my small town in Central New York.

In reaction to Davis' book Kuusisto wrote:

I’ve been trying unsuccessfully for years to imagine the kind of society that cultural theorist Lennard J. Davis envisions in his book The End of Normal. Briefly: we know race, gender, and disability are social constructions—which means in the widest sense “normality” might be, conceivably, on the ropes. A boxing analogy is appropriate. We’ve been punching Old Normal for a long time. The maddening thing is how “Normal” keeps smiling, taunting us, snarling through his tombstone perfect American teeth. And if you think his teeth are infuriating, well, his odor is worse. He smells like “Brut” and bacon.  

Taunts. Oh how I know all about taunts. I know about social injustice. I know all about stigma, fear and alienation. I have been refused service in restaurants. I am often segregated or directed to special services--special being a code word for inferior, not worthy of real inclusion. The short bus or para transit for you! Social injustice is a daily part of my life and others with typical bodies. I cannot nor will I ever live in a utopia where disability based bias does not exist. In "I have No Refuge" I was struck to read:

There is no hiding for me. I see, eat, hear, taste, smell injustice every waking minute. I live the struggle to keep people with disabilities from unnecessary institutionalization, to keep us from being killed, either by neglect or legislation, to ensure that we are thought of in the building of public spaces, in the Governor's budget, or in time of disaster. 
I have no refuge from fear, exclusion, discrimination, bothering. I cannot shut down. I cannot get away. I'm forever open to it. 

Forever. Think about that word. I often think about forever. Nothing is forever--a very old and trite line. Well for me social injustice is worse not better. Social injustice might not last an eternity, forever, but ableism will not be eradicated in my lifetime. This is where I depart from Davis. He is a first rate theoretician and The End of Normal resonated in my mind. Great book but so what. It did not help me one iota. What is the good of theory if a norm free society does not exist. Reading Davis I was reminded of Thorsten Veblen, an economist by trade and sociologist at heart. I read his 1899 text Theory of the Leisure Class. Veblen was a harsh and humorous critic of capitalism yet never was active in labor politics or social movements. Veblen thought he was merely an observer above the fray. Disability studies scholars such as Davis and other key figures in the field also work as observers above the fray. This is not a critique. We need theory. We need disability studies to be a vigorous field of academic inquiry. We need Davis and other theoreticians. I would suggest we need a lot more than theory. We need to be engaged. We people who work in what is called disability studies need to be socially and personally invested in creating social change. We in short should be leaders of a social and economic revolution. Lives are stake. If we do not become far more active in a boots on the ground style I fear we will all end up like Veblen. He died alone and impoverished in California. No human life should end that way.

I have no idea how to jump start a revolution. Disability is perpetually thought of as a medical problem. The social model of disability is virtually unknown in popular culture. Disability is rarely if ever framed as a civil rights issue. When I try to explain this to others they often reject it out right. Some even laugh at me. The ADA is an unfunded mandate. Disability rights is political correctness run amuck! No one burned a cross on your lawn! No disabled people have been lynched! This is correct. Instead we place people with a disability in institutions and their existence is quickly forgotten. Supposed kindness and care are killers. We continue to design buildings that are grossly inaccessible. Physicians refuse to treat people with a disability. People with a disability often die of physical and social neglect. Schools rely on resource rooms and segregated short buses. Airlines routinely discriminate against passengers with a disability. Wheelchairs are often broken by airlines and disrupt lives for months. Mass transportation remains a challenge to access.

People tell me I am too serious. I need to lighten up and get away and relax. Do something fun I am told. This is sound advice I have heard often. It is not easy to put into action and highlights the cultural divide between those with and those without a disability. When one has a disability throw normal out the window. Want to go out to dinner? Forget Friday and Saturday nights. Good luck dealing with other dinners, narrow aisles that cannot be navigated, and obviously annoyed staff who think you are taking up too much space. Need a bathroom? Dream on. What about going to a concert or sporting event? You must buy tickets through the box office. You leave messages and no one returns your call. At the Christmas tree lighting ceremony all the bipedal people that surrounded me appeared full of good cheer. I was across the street with my friends. I had no desire to be run into or have my view reduced to the backs of people. I also had no desire to be bumped, prodded, blessed or cursed by heavy duty Christians that abounded. Trying to depart was far from easy. People are in their own social vacuum and appear to think it is my job to laterally move around them. Wheelchairs do not move laterally. I get to the curb cut and no one moves. I am not invisible. How I wonder do people think I am going to get by. Excuse me rarely works. People are stunned I can speak. Most ignore my existence.

Go have fun. Sure, have fun in world not designed to be inclusive. Yes, lets try to eradicate the idea of normal. Good luck with that. Normal as Kuusisto noted is taunting us. I am well aware my existence is not valued. This message is far from subtle. On Facebook I described the Christmas tree ceremony and a fellow cripple who I respect suggested I should "be the change you want to see this world" and that I should "honor yourself" and to "be worthy of appreciation from others".  These are nice sentiments devoid of reality. I value my existence. I like my body. I assert my civil rights. I teach. Since the day I was paralyzed I have tried to educate others. I advocate for myself and all those disenfranchised. Like other people with a disability I am the real and symbolic form of resistance. I am the blue wheelchair logo sign. But those blue logos lead to nowhere-- an observation my son made many times as a child.  People do not want to know about injustice. People do not want to think about inconvenient truths that cloud American myths we hold near and dear.  Being depressed seems like a logical response to a world that is hostile to the presence of the atypical body. It is not just me. Try being black. Try being an obese person. Try being deaf. Try being blind. Try being paralyzed. Try being a conjoined twin. Try being gay, transgender, lesbian or bi. Try being different from the norm. Try this and you will realize the end of normal is a pipe dream.


Dianne Baumann said...

Good words Bill. The pipe dream you speak of is the 'new' American Dream: only accessible for those who fit the mold (i.e., privileged, white, able-bodied/mind, and moneyed....). An educator friend of mine recently asked me to write a short essay about living in poverty for a high school class she teaches. I did it, but I warned her ahead of time that swear words would abound and that there is no 'American Dream'. She is a woman that lives with her own social challenges, so she understood. I tell this snippet to make a point: THERE IS NO AMERICAN DREAM. Until this fact is acknowledged by those living in entitlement nothing will change. I understand your depression. How can one not be depressed given the state of our lives. Sure, we push on, but sometimes that is not enough to keep us going. Please know my friend that you matter. You are starting a revolution with your words. You have inspired me to speak out for my son and his 'people'. You have pissed me off, which has given me power. Continue to empower the powerless. You are needed and respected. You are a leader.

Stephen said...

You vacuum daily?

Jersey Guy said...

You're absolutely right. I'm going to go out on a limb here and suggest that religion plays a part in discrimination towards the disabled. All those relentless, cheery Christians either believe God punished you for some horrible transgression by making you crippled, or being crippled is just a minor annoyance you have to put up with until you get to heaven and then you'll be able to do the funky chicken all over the place on your glorious new legs.
Religion screws people up in a big way.
And anyone who posts idiotic saccharine sentiments like your acquaintance did on Facebook that urge you to turn that frown upside down deserves to be slapped.

Dianne Baumann said...

I'm a Christian and I don't think I fit that mold. I fight for social justice every day. Really Christians aren't screwed up, nor do they think its okay for anyone to be discriminated against. Sounds like you've had some bad experiences with Christians and I'd like to apologize to you for that, because my God doesn't think that's okay, in fact he teaches just the opposite.

william Peace said...

Dianne and Jersey, Thanks for interesting comments. I would not go as far as to say there is no American dream. Instead I would note the American Dream has been perverted to mean the acquisition of money and power. This is done to mislead and make people with no chance of becoming independent compliant and when they fail direct blame inward. As for religion, the less I say the better. All organized religious organizations are part of an oppressive capitalist system.
Stelhen. I do indeed vacuum daily. The little place I rent has a white carpet and white kitchen floor. I have a black lab and wheelchair. Labor intensive keeping house looking decent.

Julie H. Rose said...

I hadn't read this blog post because I was in excruciating pain on Sunday.

I've struggled with depression since I was ten. It was the first time I thought of suicide. But, I figured I wouldn't live much past puberty, so why bother?

But, I didn't die and I realized that I found life too interesting to depart from. Even pain is interesting. Sometimes it's downright amusing!

I'm not entirely sure that depression is the natural response to life's challenges. I do beliee we confuse demoralization and depression, and that makes sense, because we've divorced depression from social context. So, maybe I'm splitting hairs. But, if you want to read more about this idea, check out Bruce Levine.

I'm feeling empowered today, just because I feel in touch w/ my inner resources. That lifts me out of my morass. Disempowerment surely equals depression.

I have found that my depressions come and go. When I used to get more upset by them, they stuck around longer. When I think of what once was, or what I've lost, I get depressed, of course.

So, without being a Pollyanna, I try to savor the moment. There ar so many to savor, as you know. And anger, though so many disparage, helps. Knowing one is discriminated against and feeling the feelings that come with it, staying with them, being strong or being enraged, speaking up and out, this is good energy.

Is there an accessible Zen center near you? This is the one "religion" that I won't disparage. I'd be dead without it, I'm sure.

Anyway, thank you, for again, our conversations and your blog have helped me. I hope that my little rants help you, too, in some small way.

And I hope I don't come off as proselytizing. I am so grateful to Zen Buddhism. I can't deny it. I'm glad I wasn't infused with a religion that told me I had done something to deserve my life. I don't know how people live with that. I really do not.

Middle Child said...

So well written.Bill, I am not physically disabled but I lived along with my husband and I know. We lived out of town and actually preferred it when we shut the door on the world. Over the decades we became closer than many and I find myself unable to live as others do. Call it depression or rather in my case when I am alone or in a crowd something that the Celts accepted a melancholia. It can ease if you see something beautiful like that sunrise, or a new baby (for me) or sometimes I catch a stranger's eye and there is for the flash recognition. I just came across a second hand book in an Op shop by Thomas Moore (born 1940) called The reenchantment of the soul - and just reading the first paragraph has bought me undone - but for me I think I need to be undone. As mentioned not physically disabled - don't stand out from the crowd in any way much - but because of my life I see and am awake and once that happens which I am grateful for you are never the same again. I am much more isolated now than I ever was because when Don was alive we bounced off each other our ideas and fun - (Lucky me) As Dianne wrote - "There is no American dream" as well "There is no Australian dream" - No doubt your son knows how things work because of his life with you - as do our two adult daughters and even though they are living their own lives - I am afraid that all three of us stand out like shags on rocks - and all I can think of is that it's because we have seen and can't handle how blithely the mainstream seems to blunder along. The holiday season is hard for most people who are "outside". When Don was alive we didn't get asked out much - because it was too hard for people - the bulk of relatives who visited came for holidays as opposed to visits - so they would visit and bugger off all day just to lobe in at dinner time - in the end we had had enough and complained - so now my small family are excluded - (not complaining just explaining) which is okay because at least we don't have to pretend we are all happy happy. But I would not trade the insight we have now for anything apart from Don's not being disabled in the first place. It's not anywhere near the same but what you write really touched something. We have a magic place - the childhood home of our girls and it's locked away in our minds - it's all townhouses now.

Kate Pollack said...

Great post, Bill. So many lines stood out to me. I have been depressed this month too and have often wondered why. Being a grad student is a dream come true. Here I sit in my little office, which I have made beautiful and sweet-smelling, the curtains always drawn, in here with my books, always writing (when I am not in too much pain and must lay down). I am afraid to leave this apartment. I hardly ever do. Every time I go out by myself I am harassed. I have not been comfortable going for a walk since a man on a bicycle came after me, saying sexual things. I ran and ran to get away and a person in the neighborhood called the police. I don't want to go outside anymore. I still see this man, riding around, looking for cans. I can do nothing about it. And being deaf, well yes, that is also a factor. How many times do I have to say, no I cannot go see a movie with you?! Or whichever event or thing that is happening, I always have to worry if there are interpreters, and there never are unless someone has made an effort, sometimes me, to make sure they will be there. I never really understood people who think so much about the future. That things are going to be different someday. I agree with you, they really aren't different now and they probably never will be. Maybe in small ways but as a former genealogical and historic researcher, things are pretty similar.