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Wednesday, December 10, 2014

Social Safety Net and Fear: Be Very Afraid

As I write these words snow is falling heavily outside my window. Think winter wonderland gorgeous in every way possible. Silence reigns. The animals are hunkered down for the time being and it is silent outside. Rather than enjoy the beauty of the winter landscape I love so much I am agitated--highly agitated. A few hours ago I read an article by Andrea Louise Campbell, a professor of political science at MIT, entitled "How Medicaid Forces Families Like Mine to Stay Poor". Link: Two thoughts have dominated my mind:

1. How did we as a society allow the social safety net to be warped into a penurious system that keeps people with a disability on the edge of disaster?

2. Why are disability rights perceived to be an onerous burden that we begrudgingly and with great resistance supposedly meet?

In the article by Campbell, based on her book Trapped in America's Safety Net she details what took place to her sister-in-law after she had a car accident. At the time her sister-in-law, Marcella Wagner, was seven and a half months pregnant. Remarkably the baby survived the accident as did Wagner. However Wagner experienced a severe spinal cord injury that left her a quadriplegic. Campbell initially thought she would be able to provide her sister-in-law with a lot of help. She was after all a professor at MIT and had taught social policy for many years. What she discovered though was quite different. She could provide little help.

Adapting to a spinal cord injury is not easy. The higher the level of injury the more complex and expensive life becomes. The difficulty adapting to a SCI extends well beyond the body.  Forget the physical adjustment. Forget the stigmatized identity and the diminished social status. Over time the vast majority of people who have a SCI eventually adapt. Today however newly minted cripples enter an even more hostile world than the one I adapted to long ago. Campbell vividly detailed the harsh reality her sister-in-law encountered:

The accident caused more than the physical and emotional devastation that upended Marcella's career plans. It also brought about an economic tragedy that hurtled her young family into a world of means tested social assistance programs, the safety net of public programs for the poor... The  programs Marcella now needs as a quadriplegic have helped her in many ways, but have also  thrust her, my brother, and their young son into poverty, with little hope of escape. Until this accident, I did not realize the depth of the trap.

Ah, welcome to the land of disability.  Our current means tested social assistance programs are designed to keep people with a disability impoverished and on the edge of disaster. Immediately following her injury it was clear to Campbell that her sister-in-law's career plans were in tatters. She, her husband, and infant were going to have to be impoverished to survive. They were told to get rid of everything they owned, spend down, and declare bankruptcy. Campbell wrote:

In order to get poor people's health insurance, Dave and Marcella must stay poor forever. Marcella qualified for Medi-Cal because she is disabled, but because Medi-Cal is for poor people, Dave and Marcella have to be poor to receive it--they have to meet the programs income test. Counterintuitively, meeting the income test does not mean having enough income (as in doing well on the test), but rather having low enough income. The income test is actually an income limit. 

Again, welcome to the land of disability. The poor are not to be trusted. Those with a  disability cannot be trusted. Do not exceed the allotted number of catheters per month. You had damn well better hold onto the receipts and be able to demonstrate you have used up the allotted amount.  If you need more be prepared for a mountain of pile work and documentation.

The system is punitive in a myriad of ways and while it helps it hurts and grinds people down.

Assets cannot exceed $3,150.

Money cannot be used to pay student loans or household bills.

One cannot save for retirement.

An emergency fund cannot be created in the event they have a household or personal emergency.

One cannot save for a child's education.

A family member cannot pay for their niece or nephew education. That would be considered income.

Any inheritance for their son would go to Medi-Cal.

In short, Campbell's sister-in-law and brother are barred from doing what everyone else in America tries to do--save for retirement, pay for their child's education, and earn as much money as possible or desired.

Campbell gets to the bottom line, a twisted bottom line at that.

America's social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor. They are designed to be less attractive than work. One problem is that they are so miserly as to be impossible to live on. For a disabled person like Marcella, whose expenses will be greater than for an able bodied person, the limits are truly problematic. And because insurance for the poor is the only source of the long term supports and services the disabled need, they get caught up in the anti-poor dragnet as well. 

Campbell put the perfect face on why so many paralyzed people are forced to live in poverty. That is live in poverty forever. To raise children in poverty. To be unable to have careers. To lack the ability to get a higher education. To travel. The list of impossibilities is heart breaking. Worse, is the cost of empowering technology in the form of a wheelchair. Sure it is covered but not an appropriate wheelchair. A used power wheelchair costs about $25,000. Need a wheelchair cushion to prevent pressure sores? Good luck. For me I must have a demonstrated medical need. That means being hospitalized with a pressure sore three times in one calendar year. Yes, to have a cushion designed to prevent pressure sores one must develop a pressure sore first and do so three times. Need to renovate your home to be wheelchair accessible? Good luck. Create a fund raiser because those funds are not going to appear.

Campbell and others come to a basic conclusion: American social policy is rotten to the core. So on this lovely day as I look out at a thick blanket of snow and I get it. I really do. Crippled people are unwanted. Corporations consider us a drain on profits. Our elected officials think we are crooks looking for a free ride. The poor and disabled can't be trusted. Our desire to be connected to the community is cut off--go to the nursing nursing home from which you will never emerge. Mass transportation is too expensive. A lift on the bus? Sorry you are not worth it. Housing that is accessible. Dream on. Campbell did a great job putting a human face on what can happen. It is instructive to "read through the heart breaking stories" and the "many similar horrible situations, including many who thought they had good health insurance until a catastrophic accident or expensive medical condition proved otherwise". I wonder though, are such stories helpful. Some will dismiss it as anecdotal and not an accurate representation of the social safety net. My real fear is such stories will be counter productive. People have always feared disability. The story Campbell's sister-in-law only heightens that fear. If people cared, that is if people wanted to have the elderly, poor and disabled as vibrant members of society, we would not have accepted a rotten social support system. Campbell is correct--rotten to the core. Leave it to me to spoil a wonderful day.

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.