At present, my life is severely limited. I do not sit up for more than 90 minutes and am essentially bed bound. By itself, this brings back flood of unpleasant memories circa 2010 when a wound almost ended my life and required me to spend an entire year in bed. While I am not enduring anything close to what took place in 2010, I am miserable. Imagine this. You feel great. Life is good. Work is rewarding and your life is rich and full. Your calendar is packed. Then you see not one but two skin breakdowns and as an added bonus your anus feels like it is on fire. A mirror reveals a small but significant wound. The cure, bed rest, will without question work. The key to healing is pressure relief and elevating your feet. I am not at all worried about healing. I have been down this road before. I do worry about my mental health. Being in bed all day is mind numbing. Hence when I read Atul Gawande's Being Mortal in preparation for my class on disability and bioethics his words deeply resonated. I am feeling my mortality and experiencing what he identified as the three plagues denizens of nursing homes experience; boredom, loneliness, and helplessness. I am bored, lonely, and feel helpless. The rational part of my brain acknowledges this is a short term problem. I am likely going to be healed by the end of December. I know all too well wounds can be life threatening. I also know I am extremely lucky. I have two roommates and my son nearby who have done all my errands. I live downtown and a few friends have visited me. I am not good company and prefer to be alone. Those that have visited know me well and do not stay long. Their presence is greatly appreciated.
Based on previous experience, there is one effective means of adapting to my current situation: I shut out the world. I cancelled all plans from Thanksgiving to January 1. Everyday I wake up look around my room and know I am exceptionally lucky. I have 35 plus years of experience healing wounds and adapting to pain. I let the pain sweep over me and embrace it like a long lost lover. I constantly remind myself I have not been forced into a nursing home. I am not eating institutional food. I am not dependent upon uncaring others who are poorly paid and over worked. I am not isolated like I once was in Cazenovia. My current living situation is ideal. I am not a significant burden upon others. I carefully navigate who I ask for help as I know I am going to need assistance for many more weeks. I am living the theory of situational autonomy. As a scholar, I can function from my home. I am not in fear of financial ruin. Debridement was successful. My skin will heal. It is not a mater of if it will heal but rather when. My estimate that I will be healed by January 1 may be correct. It may be wrong. Healing a wound is as much art as it is science.
Back to Gawande. I am experiencing the three plagues. I am bored. I am lonely. I feel helpless. I teeter on the edge of clinical depression. The days go by in a blur. I accomplish little. I see the hard earned muscular development I worked so hard to acquire all summer on hard charging hand cycle rides fading away. I desperately miss walking my beloved and recently deceased lab Kate. I miss my walk to the bus stop and commute to campus. The bus ride is an ever present reminder that poverty is rampant. In short, I miss my usual active life. My daily existence is purgatory-esque. Again the rational part of my brain knows I am in a liminal state. In a few weeks I will wean myself back to what passes for normal when you are paralyzed. None of this helps in real time. I leave my apartment twice a week to teach. That will end when I teach my last class of the semester and await finals to pour into my email box. I am comforted by the knowledge my class went very well. For the first time, my honors students took chances and did truly original work. This is beyond satisfying.
The knowledge Christmas season is upon us does not help my spirits. I dread Christmas and the season of false good cheer. Oddly, my wound came at the perfect time. I have an excuse to keep myself locked up and avoid the revery associated with Christmas. I can be a grinch in private. Hence I find some comfort trapped in my apartment. An additional bonus is that locked away, I am not forced to deal with the fall out of the Presidential election and the shameful result. I was so naive. I had faith in American people. Other demagogues have run for president and been soundly defeated. I refused to believe once a citizen entered a polling station they could in good faith vote for Trump. To me, the election was about electing a professional seasoned politician or a TV reality buffoon. There was no choice. Alas I was wildly wrong. I hope those that voted for Trump are happy. Each and every vote for Trump was a vote for hate and ignorance. In the ensuing weeks incidents of violence toward marginalized peoples has increased. All those I know who are vulnerable report a significant increase in hatred spewed their way. An ignorant bully is president elect. As the nation's "leader" Trump has emboldened bigots nationwide.
I am not being overly dramatic about the dire cultural consequences of the election. Trump's victory will have disastrous consequences for vulnerable people. I will suffer. My fiends will suffer. Some people with a disability will die via budget cuts and an all out effort to undermine disability rights. All minority groups are at risk. There is no need to read the many grim reports about the future Trump administration. My concern is greater. What are the cultural consequences of having elected a demagogue who is entirely reliant on hatred and ignorance? For my good friend and fellow scholar Stephen Kuusisto the consequences were very real and shocking. Kuusisto did the ordinary. Preparing for a trip from Syracuse to Ann Arbor Michigan he called cab company. This is a mundane and short call but not for Kuusisto or any other person with a guide dog. At Planet of the Blind he wrote:
In a mood of warm anticipation, packing for my trip from Syracuse to Detroit, I was wholly unprepared for the mean spirited encounter I had by phone with a cab company in Ann Arbor this afternoon. Just recounting what happened is an exercise so objectionable I’m forced to be brisk as the altercation was nasty. I told the man who answered the phone I needed a ride from Detroit-Ft. Wayne airport to the U of Michigan. He was agreeable. Then I said I had a guide dog. He was disagreeable. He said:
“These dogs are stinky, they go to the bathroom, they’re dirty, I can’t have them.” “Not the first time this has happened to me,” I thought. “Guide dogs are allowed everywhere,” I said. “I don’t care, now you’re going to tell me all about your rights,” he said. (Sneering, he was. Your rights…uttered as if I was some whiny baby. “Well yes,” I said, “it’s a violation of state and federal laws to deny a blind person and his dog a cab ride.” “I don’t care,” he said. “You should care,” I said. “It will become a big story. Plus there’s a huge fine associated with this.” “I don’t care,” he said. “This will become a news story,” I said. “I myself write for newspapers like the New York Times…) It’s hard to describe the effect this had on him. He began shouting that Donald Trump had won the presidency and “you people” (apparently meaning blind New York Times readers) “don’t matter anymore.” He was absolutely vicious and crowing about how people like me don’t matter. I said, “well, I’m going to turn you in to the Department of Justice.” He said he didn’t care. I hung up. Link: https://stephenkuusisto.com
As many moving memoirs written by people with a disability reveal, beneath the thin veneer of "be kind to the handicapped" bubbles a sea of animosity and outright hatred. I have heard the sneering phrase "you people" many times. This animosity is expressed when a person with a disability asserts their civil rights. People with a disability have no rights. The very idea of disability rights as the equivalent of civil rights is often met with hostility. Many a time I have been told "no one ever burned a cross on your lawn". This is correct but that does not mean I welcome in any town or city in America. Take an old impoverished city like Syracuse. 95% of housing is not inaccessible. I am told "its an old city" and this too is correct. This observation does nothing to enhance my housing options. Worse, Syracuse University has no accessible housing for visiting scholars with a disability. This is a blatant form of discrimination and the university has no plans to make faculty housing accessible. The assumption is we cripples are not professorial material.The nasty exchange Kuusisto experienced was unnecessary. The man on the other side of the phone was empowered by hate and ignorance. He chose to be nasty. He was politely warned he was breaking the law. He did not care. He chose to denigrate a poet, scholar, and disability rights activist. This is not an isolated incident. It was not a fluke. It was not one man having a bad who decided to be as mean spirited as humanly possible. Every person with a disability I have met have had similar experiences. Such disturbing interactions occur most frequently when people with a disability travel. The airline industry despises passengers that use wheelchairs. Cab companies hate blind people who are part of a guide dog team. Kuusisto has filed a formal complaint with the Deparment of Justice. As I told Kuusisto the day he was harassed that "the man fucked with the wrong person". Like me, Kuusisto refuses to bow before such bigotry. We stand tall and assert our civil rights. This makes us decidedly unpopular. I am repeatedly told "I have a chip on my shoulder". That is correct. When my civil rights are violated I get angry. My anger is righteous. My anger has nothing to be with the fact I cannot walk. My anger is related to living in a world that is hostile to my presence. I am far from alone. Any person with unusual anatomical features attracts unwanted attention.
What typical others do not grasp, is the psychic toll involved when an angry confrontation takes place. After his call Kuusisto was shaking. I have had comparable experiences. Such bigoted calls beget more phone calls in order to report the incident. One then must follow up in writing because bigots have a penchant for denying such exchanges took place. The airline industry specializes in violating the Air Carrier Access Act and creates a paper trail to make it appear as though an incident never took place. Thus when an airline breaks a wheelchair as they often do, one must provide photographic evidence.
Back to Kuusisto. He ends his post in a devastating manner that had me shaking. He wonders: Is Trump’s ascendancy now a patented script? If you hail from a historically marginalized group you know the answer." Ask any Hispanic kid in secondary school who has heard the chant "build the wall". Ask any woman who has heard misogynist comments directed at her. Think of Trump calling Hilary Clinton a "nasty woman". Ask any person who has a different body and requires the most basic reasonable accommodation. Ask anyone in the LGBTQ community that has the audacity to defy accepted stereotypes associated with gender and heterosexual norms. I know the response without asking. We marginalized people are afraid. I am afraid I will no longer be able to have health insurance given my pre existing condition. I am afraid of the kind physician I have never met that will decide I have suffered enough. I am afraid of the bigots in Syracuse that call me a retard and laugh hysterically. I was shocked when I got on the bus a few months ago and a person refused to move telling me "you people are an economic drain and leech on society". Remarkably, I have heard this before and much worse.
I started this post last weekend. Since then 60 minutes aired a vicious attack on the ADA. I do not have the heart to provide a link as it is one of many such attacks undertaken since the ADA was passed into law 26 years ago. Aside from my fear, I am truly worried we as a nation are slipping into a Dark Age. Facts no longer seem to matter. Anything goes. Our president elect openly mocked a reporter from the New York Times and stated that he can grab any woman by the pussy because he was famous. Millions of people voted for this man. We now have a professor watch list and a new era of McCarthyism. A tidal wave of anti intellectualism is upon us. Young people, the students I teach, are screwed. They work hard, earn a BA and many are unemployed or work in dead end jobs. None of these observations are original and they make being trapped in bed seem appealing. What does the future hold? Kuusisto thinks "you can bank on what’s to come: elimination of more voting rights, destruction of women’s rights, piece by piece, deportations and unlawful arrests, a significant boost to the school to prison pipeline, toxic water and air—the list is too long for a customary sentence in the English language." These thoughts are unsettling. I do not sleep well. I am ashamed of the American people. We allowed the Presidential election to be turned into a TV reality show. We elected a man who creates one false narrative after another. The next four years are going to hard. The nation is being led by a bully who twists the truth to suit whatever whim struck his fancy. Scared, afraid, and depressed. My mood fits the times.
