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Tuesday, January 10, 2017

Streep Follow Up and Suggested Readings

My email box is filled with hate email. Trump supporters are decidedly unhappy with me. I expected some backlash because of my post yesterday but the level of hatred spewed was nastier than expected. I was deemed an "elitist scum bag", a "whiner who balks when treated like everybody else", a "liberal know nothing", a "crippled loser that should run home to mommy", and my favorite an "Ivy League pig who wallows in his own filth". Deleted were a ton of F bombs. What a world we live in. Bullying behavior is rapidly becoming the norm with the President elect leading the way via twitter and 140 character out bursts of petulant anger.

As I look outside, I see a steel gray sky and a mix of rain, ice, snow and sleet. Since this is Syracuse, much of what I see falling from the sky is moving sideways. On a day like this it would be easy to grow depressed. I have chosen to focus on the positive--specifically the many fine essays that have been written in the last 24 hours that address Meryl Streep's speech and criticism of the President elect. We people with a disability and our non disabled supporters have risen to the occasion. First and foremost, I am not alone. Streep's words have been deemed ableist by others. By itself, this is heartening. Second, like others, I hope we can move past the repeated and shallow discussion of Trump mocking Serge Kovaleski and have a detailed discussion about the barriers people with a disability encounter in the post ADA era. Foremost in my mind is the deadly troika--unemployment, lack of adequate housing, and long standing trouble using mass transportation.  These structural flaws lead people with a disability to live in poverty. Worse, our tattered and depleted social safety net demands that people with a disability live on the very edge of social and economic oblivion.

What people with a disability do have in abundance is the ability to adapt and be wildly creative. We are not the meek miserable beings typical others imagine. In the last 24 hours we have had much to say about Streep's speech and the President elect. Here then is a random sampling of essays that resonated for me:

Girlwiththecane, "Meryl Streep We Don't Need Your Outrage", link: http://www.girlwiththecane.com/meryl-streep/ The line "no power to fight back" is objectionable and disempowering.

Kim Saunder, aka Crippled Scholar, series of tweets, link: https://twitter.com/crippledscholar/status/818513044519194626 and a previous post about Trump, link: https://crippledscholar.com/2016/11/19/the-problem-with-paternalizing-disabled-people-to-protest-donald-trump/

A Washington Post article that covered the basics, link: https://www.washingtonpost.com/news/the-fix/wp/2017/01/09/meryl-streep-was-right-donald-trump-did-mock-a-disabled-reporter/?utm_term=.dbdb21a22115

David Perry at CNN, link: http://www.cnn.com/2017/01/09/opinions/streep-trump-real-talk-perry-opinion/index.html  Perry, whose son has Down Syndrome and writes frequently about disability rights, suggests Trump's bullying ways need to be replaced by empathy. I share this sentiment but have no expectation this will ever come to pass.

Emily Ladau, "Im a Disabled Woman Who's Not Celebrating Meryl Streep", link: https://theestablishment.co/im-a-disabled-woman-who-s-not-celebrating-meryl-streep-s-golden-globes-speech-8d67173122e7#.u68aexpsx Like me, Ladau tries to maintain a polite tone with regard to Streep's speech but is deeply troubled by just how mild her words were and how they lacked nuance.

Last and by far my favorite essay at Star in Her Eye, "Tumbling in America", link: https://starinhereye.wordpress.com/2017/01/10/tumbling-in-america/  As many people with a disability can attest, social rejection is rampant. In this post, Heather Kirn Lanier writes about how her daughter was social rejected by another child--the first such post election rejection. Placed in the larger social context she wrote it:

is the grade-school playground mockery of a person with disabilities. It is, as Ann Coulter unfortunately worded, “The Standard Retard.” “He was just doing the standard retard,” she argued, and if she is right, it makes matters worse. When our president-elect imitates someone he wants to mock, he sometimes uses his body to call them “retarded.” His limbs become the epithet. He makes his body odd-seeming, out of the norm, less-than-functional. This is ableism at the heart. The fact that he uses a much lighter version of this gesture on non-disabled people doesn’t make him any less ableist, any less offensive, any less cruel. I cannot, will not forget. And I’m grateful that Meryl Streep said the same at the Golden Globes two nights ago
Ableism at heart. Yes! Trump gives every bigot in America free reign to be cruel. Here Streep was spot on. "Disrespect invites disrespect. Violence incites violence." People with a disability know a lot about disrespect and violence. We are routinely disrespected. Indeed, disrespect is the norm. Violence too is the norm. Like it or not, we people with a disability are vulnerable. Abuse is rampant and takes many different forms. A month ago it was a cab driver who refused to pick up my colleague Steve Kuusisto with his service dog and was aggressively nasty about it. The same month I was mocked by some teenagers in downtown Syracuse who laughed and called me retarded. Bullies take many forms. Months ago unwanted help was thrust upon me not once or twice but three times by an employee at Liehs and Steigerwald Downtown and this veneer of good will turned instantly nasty and confrontational when such "help" was politely rejected. Instantly, I became a problem. Examples abound and I want to be clear I am lucky. I have not been physically assaulted. I have not been raped. I have not been assaulted by the police. And yes I fear the police. I cannot comply with their orders. I can not exit my vehicle as they would expect and demand. That alone makes me a threat. Kirn Lanier noted we have a lot of work to do. No kidding. What can we do? I honestly don't know. Trump is a serial abuser and bully. He has been elected President of the United States. He is the most visible man in the nation. Frankly, I am afraid. I am afraid of the hate and ignorance Trump generates and how that will play out on the streets, schools, and institutions that dot the cultural landscape. The is a first for me and I fear we will plunge into a Dark Age from which we may not emerge.  While this is a grim assessment, I know there is a vibrant resistance movement among my people. That fact alone is enough to keep my faith in people alive.

Monday, January 9, 2017

Meryl Streep, Ableism and Help

Social media as related to disability rights has been abuzz the last 24 hours. Meryl Streep's speech after receiving the Cecil B. DeMille award for lifetime achievement at the Golden Globe ceremonies is being lauded by many. Mainstream news outlets maintain she "brought down the house". Words such as amazing, inspirational, phenomenal etc are being used to describe her speech. It was without question a good speech. In a pithy 6 1/2 minutes, Streep took the president elect to task without mentioning him by name and did so with grace, dignity, and humor. Link to transcript: http://www.harpersbazaar.com/culture/film-tv/news/a19828/meryl-street-golden-globes-speech-transcript/ Streep stated:

There was one performance this year that stunned me. It sank its hooks in my heart. Not because it was good. There was nothing good about it. But it was effective and it did its job. It made its intended audience laugh and show their teeth. It was that moment when the person asking to sit in the most respected seat in our country imitated a disabled reporter, someone he outranked in privilege, power, and the capacity to fight back. It kind of broke my heart when I saw it. I still can't get it out of my head because it wasn't in a movie. It was real life. And this instinct to humiliate, when it's modeled by someone in the public platform, by someone powerful, it filters down into everybody's life, because it kind of gives permission for other people to do the same thing. Disrespect invites disrespect. Violence incites violence. When the powerful use their position to bully others, we all lose. 
Streep's word fall flat for me and I many who champion disability rights. In no way do I take exception to what Streep had to say. She was spot on and it was an excellent critique of the President elect. It is not a new critique nor is it nuanced--and this is where my frustration starts. Trump's mocking New York Times reporter Serge Kovaleski is old news. It is widely regarded as the low point of the Trump campaign. Trump support took a steep drop in the polls after the video went viral.
In the months leading up to the election the Clinton campaign seized on the video and for the first time a mainstream candidate made disability rights a core issue of the campaign. Much more is involved here than the mocking of a single reporter with a disability. The mocking however is where the critique begins and ends. Think about Streep's words:

"out ranked in privilege, power, and the capacity to fight back"

"it broke my heart"

"I still can't get it out of my head" 

In my estimation, Streep's words are ableist in the extreme. They reinforce deeply ingrained ableist beliefs woven into the fabric of society. Disability rights and civil rights are rarely considered to be one in the same. Forty years of progressive legislation designed to protect the rights of people with a disability has yielded no social demand to enforce laws such as the ADA. The inclusion of people with a disability remains a problem. Hence my existence is a never ending problem that must be managed by others--typically non disabled others. The ordinary, even 26 years post ADA, is illusive. Every time I leave my home I must navigate a hostile world. The hostility takes a myriad of forms. Here in gritty Syracuse, snow removal on sidewalks is non existent. I can no longer navigate my way to the bus stop. Syracuse University spent millions of dollars constructing a promenade and, as one person humorously stated, it has more steps than an Irish folk dancer. When I stated the promenade was a symbolic fuck you to every person on campus that uses a wheelchair all I heard in reply was silence (and that silence included the university ADA coordinator). Syracuse University also dedicated itself to OrangeSUcess knowing it was inaccessible to blind faculty and students. The lack of inclusion is not limited to Syracuse. Barriers abound nationwide. Indeed, I encounter barriers, social and physical, every time I leave my home. Those barriers peak when I travel. Good luck finding an accessible bathroom. Good luck finding an accessible hotel room that is actually accessible. Good luck finding a restaurant that has wide enough aisles to navigate using a wheelchair. Good luck finding airline personnel that are not point blank rude. Good luck purchasing tickets to a concert or sporting event that do not involve calling a special number and paying box office rates.

Again, I appreciate Streep's passion and support. I agree whole heartedly that Trump has emboldened bigots and racists nationwide. Trump's reliance on hatred and ignorance has indeed filtered down to the rest of society. With regard to disability what I find fascinating are public myths versus reality. Like Streep I am broken hearted but for different reasons. The mocking of a reporter with a disability was perceived to be in exceptionally bad taste. There is the public perception that one must be kind to the handicapped. There is a hazy idea a law was passed long time ago that solved all the problems people with a disability encounter. Some people with a disability have "overcome" their disability but remain vulnerable and somehow less. Given our lowly status, Streep is broken hearted and cannot get the way Trump mocked a reporter with a disability out of her head. The reporter in question does not have the power, prestige or privilege of Trump. This line of reasoning is as ableist as Trump mocking a reporter with a disability.

What we people with a disability need is political allies. I for one do not need protection from bullies like Trump. I need steady employment. I need reliable and easy access to mass transportation. I need affordable and plentiful choices in accessible housing. I need equal access to our health care system. I need to leave my accessible home and not encounter physical and social barriers. My needs, the needs of all people with a disability, are no different than what typical others take for granted.  I also know I will not live to see the day when my crippled body is equal. In short, I am sorry Streep's words ring hollow. A 6 1/2 minute speech at the Golden Globe awards delivered to a room of A list celebrities is not going to change my life or the life of others with a disability. I saw a room full of privileged people and a stage that required Streep to walk up steps to access.

Imagine a different scenario. What if Streep spent 6 1/2 minutes addressing the fact Hollywood producers consistently hire non disabled actors to play the part of disabled people. What if Streep talked about this sort of "cripping up". I know she would not be lauded for her words. She would not be described as amazing and inspiring. Simply put, I am weary of heart felt emotions and the lack of social progress in the real world. For me, Trump mocking a disabled reporter has become a game of dodge ball. All express outrage--Trump mocked a disabled reporter. That is the start, middle, and end of discussion.

What we people with a disability need is a revolution. Our power is in our ability to adapt and press forward. We are remarkably creative people routinely underestimated by others. Our lives are not bleak nor are they devoid of work, friendship, love and sex. We are humanity reduced to its most basic elements and as such we are feared. The resulting disempowerment via unemployment and the lack of accessible housing and transportation is a deadly mix that is a human rights crisis no one talks about (exceptions exist of course). What we people with a disability want to do is the work of science fiction novelists. We want to build a better world for all people. We don't need nor desire pity or charitable efforts. We have no special needs nor do we need special education. What we need is the imagination to think and dream of a society that is inclusive and values our existence.

I just cannot bring myself to feel the warm glow of Streep's words.  I know I am not alone. Many people with a disability have acknowledged Streep's speech was excellent but that it failed to resonate. Link: https://storify.com/emily_ladau/why-i-m-not-celebrating-meryl-streep-s-mention-of- I look forward to reading what other activists and scholars will write in the coming days. What I fear is ingrained ableism. I have done my level best to maintain a respectful tone in this post. For I know one must not bite the hand that feeds you. That old phrase often gets trotted out when a person with a disability such as myself has the audacity to comment on the efforts of non disabled others who want to help. Sadly, I have learned not to trust those that want to help. For example, non profits abound that are designed to help people with a disability. The vast majority of them have no employees with a disability nor is a person with a disability on the board of directors. That sort of socio-economic structure is objectionable to me. What I need help doing is inciting a wildly creative revolution. I know for sure what I want to do cannot be done alone. I am not turning my back on Streep and others who support disability rights. Our freedom and civil rights are intertwined. What I ask is simple. Do not ask me when will I be satisfied about the status of disability rights. I doubt I will ever live to see the day I am satisfied. My words here put me in the company of the great Martin Luther King whose famously noted in his 1963 Letter from a Birmingham Jail that an injustice anywhere is a threat to justice everywhere.

Thursday, December 29, 2016

Nancy Mairs and Cripple Swagger

It was great sadness that I read Nancy Mairs died. When I heard the news I instantly thought of her classic essay "On Being a Cripple". Mairs essay is a classic piece in the small world of disability studies. I recall reading the essay when it was published and being enthralled. She wrote "As a cripple, I swagger". Like Mairs, I use the word cripple to describe myself and my people. I am a cripple. When I use this word typical others get very uncomfortable. My niece who works in adaptive sports was appalled when I self identified as a cripple. She looked at me with great compassion and said "Oh, Uncle Bill". I consider her the rock star niece of the family. Maybe it is because more than any other member of my family she gets disability. She does not like the word cripple for the exact reason Mairs myself and many others with a disability embrace it--the word makes typical others uncomfortable. The word stops people. It is easy to gloss over the words disabled and handicapped. The same can be said for special needs and special education. I want people to know I am a hard man. I am hard because American society is hostile to disability rights. The ADA is 26 years old and there is no social mandate to enforce the law. Worse, the ADA has been under relentless attack since the day it was passed into law. This December 60 Minutes just aired an irresponsible and wildly wrong attack on the ADA. I am sure it garnered good ratings and empowered ableist bigots to rail against disability rights.

As I have thought about Mairs death from enforced bed rest due to skin woes, I wondered why I am drawn to the work of so few people associated with disability studies. I have wondered about this for many years. Disability studies scholars are my kind of people. I should be enamored with the field. This is not the case. I find the field insular. I am a rarity in disability studies and bioethics in that I have a Columbia University PhD and long track record of publishing essays in host of peer reviewed journals. So what is my problem with disability studies? Too few scholars want to change the cultural landscape. People with a disability remain marginalized in great numbers. We are also unemployed in most cases. We are not remotely equal to typical others. No doubt the law is on our side but typical others consistently frame disability as a medical problem.

When it comes to disability, history demonstrates effective change takes place via direct confrontation. Far too few in the field of disability studies are willing to be confrontational. Far too few push back against rampant ableism in their work and life. I read many fine theoretical texts in the field of disability studies. They are a challenge and intellectually stimulating. They will earn young scholars a tenure track job but I often find myself wondering how will they empower your average person with a disability? Not at all. With Trump as president elect, every vulnerable population is at risk. I am worried about myself and health insurance. I am worried about a small wound that has forced me to bed rest. I cannot afford the wound dressings that will enable me to heal as fast as humanly possible. This will make my enforced bed rest last weeks longer than it should. I look at my wound every day and wonder why are so few scholars in the field of disability studies engaged with the real world struggles of your average cripple.

How does one change the cultural landscape? For Mairs, it was writing in a way that defied stereotypes. She was, as all humans are, a flawed person. She was diagnosed with MS at 29. Mairs struggled with depression. Maris wrote about what it felt like to feel suicidal. She wrote about being a "bad" wife and bad mother. She wrote about her husband's cancer and his infidelity.  She was not an archetype. She was not a super cripple. She was as flawed as the person standing next to her. She wrote "there are rewards for making the world physically and emotionally accessible to all people, including benefits that accrue to society as whole. The more perspectives that can be brought to bear on human experience, even from the slant of a wheelchair or a hospital bed, or through the ears of a blind person or the fingers of someone who is deaf, the richer that experience becomes". 

Like Mairs, I struggle with my body. My body is wildly dysfunctional and different. When she wrote "I am appalled by my appearance" I instantly felt a kinship. Unlike Mairs who "devoted an absurd amount of time and expense to its decoration" I have no such desire. While part of me is indeed appalled by my body, another part is proud of what my body can do. And here I know I am privileged. I can all my own body care. I am not physically dependent upon others and my life trajectory in every way is radically different from someone who needs help with the the ordinary.

Last night as I was reading Mairs memoir, Waist High in the World, I was reminded that we may celebrate those whose are physically perfect and wealthy (super models and professional athletes for instance) and what those perfect bodies can do those of us who are obviously imperfect and crippled can lead authentic and valuable lives. This is the heart of the problem with disability studies. There is a disturbing lack passion and engagement. Scholars care deeply about heir work. This I do not question but do they care about your average cripple? Do they care about a crippled person who has not been out of their house in years? Do they care that getting a properly fitting wheelchair can take years? Do they care I cannot access to basic health care is exceedingly difficult? Do they care that the mass transit system is difficult to access and para transit is inherently flawed? Do they care about the unemployment rate of 66%? Some do. Many do not. The privilege associated with the field is deeply troublesome. I go out of my way to be an advocate as well scholar because I have had a privileged upbringing and education. My advocacy has without question hurt my academic career. I know I am instantly dismissed from applying to some jobs because I advocate against assisted suicide legislation. The point here is that when the field of disability studies was created advocacy and scholarship went hand in hand. Today they are two very different worlds. Scholarship and advocacy can live in harmony. Some scholars have achieved this. Mairs did it. I am doing it. My deceased disability forebearers did it--people like Ed Roberts, Robert Murphy, Harriett Mcbride Johnson, Helen Keller, Mark O'Brien and many others whose legacy is largely unknown.

Only one thing surprised me as I read Waist High in the World. I forgot how nuanced her writing was on end of life, euthanasia, and assisted suicide legislation. Her words struck home as I am currently dealing with a wound that has made life come to an abrupt halt. What I have lost is a measure of control. I do not go anywhere. Others shop for me. I am without question dependent upon others. I will remain dependent upon others for many more weeks. I am isolated to a degree. Enter Mairs:

I want to be the one in charge of my life, including its end, and I want to to be able to enlist someone to terminate it if I choose "rational" suicide. I have a friend, a doctor whom I admire deeply, who has told me about assisting a patient, irreversibly ill and on a ventilator, to die. Listening carefully to the man's clear and repeated requests, calling together his family for their last goodbyes, administering a shot of morhphine to ease his passage, turning off the ventilator, remaining with him until he had gone. I would hope to find someone as brave and compassionate if I were to make a similar appeal.

Superficially it would appear Mairs is in favor of assisted suicide. This is not the case. To a degree the words above are a romantic ideal about the end of life. Written in 1986, much has changed. My students have no idea who Jack Kevorkian was. Today, a person's physician who has followed their care for many years is replaced by a hospitalist when admitted to a hospital. Continuity of care is absent in the name of efficiency. The point Mairs was making was about control. Mairs wanted a degree of control about her care and eventual death. She rejected any and all crusaders for euthanasia and assisted suicide. She identifies Dr. Death a.k.a. Jack Kevorkian as a crusader. She astutely rejected any advocate for assisted suicide because they are not looking after an individual approaching end of life but rather have an agenda. She also knew how physicians frame end of life as a failure.

Doctors despise disease, or else they wouldn't become doctors, and I have heard of those who couldn't bring themselves to tell a patient she or he had multiple sclerosis because the diagnosis seemed too horrible to bear. Isn't a doctor suffering from this kind of anxiety all too likely to tell me "You have MS? Of course you want to die! Here, let me write you a prescription so you can peacefully end it all".

Mairs knows, as do those who oppose assisted suicide, that all the safe guards in the world are inadequate. Mairs knows as do I that regulation cannot eliminate "subtle pressure to end a life perceived by others to be insufferable. If, ideally I ought never to to have been born, and if my dependent existence creates a burden on those who must care for me, then don't I have not merely the right but the obligation to die? How can I honorably choose  otherwise? 

What Mairs has eloquently done is to acknowledge what slick efforts to pass assisted suicide legislation seek to dismiss.

My concern is that these issues be confronted  in such way as to create a social climate in which people with disabilities perceive life to be an honorable choice. And that means sending the social message that disabled people are valued and valuable, precious even, by investing in, financially and emotionally, in institutions and practices that help them out.

We are not interested in helping people with a disability lead a rich and full life. Social supports come with strings attached. Worse, if you need social supports you are an economic burden on society. I know this to be true because total strangers on Syracuse city buses tell me so. Depend upon Social Security Disability leads to a life on the edge of economic oblivion. We have a president elect that openly mocked a reporter with a disability. Paul Ryan wants to repeal or revise the Affordable Health Care Act. What reigns supreme today is hate and ignorance. That is why people such as myself were shocked by the election. We people with a disability and other vulnerable populations are hated. Strangers hate me. Emboldened by a bullying president elect and republican controlled house and senate ableism is rampant. Hate crimes are increasingly common. I need not go on. Those who are vulnerable get the message.

Aside from my life coming to a halt, reading Mairs made me realize a harsh reality. It is likely I will get a wound that will not heal. That wound will require expensive care that will not be covered by health insurance. I have been down this road. In 2010 I had the support of my family and without their support I would have died. I no longer have any familial support. In 2010 I knew I was burning a bridge. I was completely and utterly dependent upon family for financial and physical support. I know I am on my own now. I can survive a few weeks but if I get a wound that fails to heal I will die. I will die because we as a society have chosen not to do what Mairs thinks should be done--provide adequate social and institutional supports to empower people with a disability the time to heal and eventually thrive. Grim thoughts as 2016 comes to an end.

Thursday, December 8, 2016

Silence, Hatred and Ignorance

It has been four weeks since I have put up a post and a few people are reaching out to me asking if I am alright. The short answer is yes. The long answer is I have health care woes and am experiencing significant pain as a result. My skin woes require me to remain in bed and keep all pressure off a wound. My time sitting is severely limited and I am dependent upon others to do mundane chores for me.  I am also having a hard time accessing basic health care. For example, without a referring physician no local wound care department was willing to set up an immediate appointment. I was offered an appointment in many weeks but had an immediate need to deride a wound. Unwilling to risk a visit to the ER I debrided the wound myself. This was a bloody and somewhat traumatic experience. Essentially I performed bed side surgery.

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. 

Friday, November 4, 2016

An Addendum: Ignorance and Presumption of Incompetence

In my last post I wrote about being harassed by inner city youth. Such harassment is not restricted to the young. I suspect the young men that harassed me saw an easy mark. This makes them like most people who see disability as a problem. For most typical others, all they see is a wheelchair. I am wheelchair man and thanks to the new blue wheelchair logo I am wheelchair action man. However the new logo has not changed the assumption that  life using a wheelchair is inherently less and sub-standard. I am now and forever in dire need of help. The fact I do not need help doing the ordinary never crosses people's minds. Like it or not, social boundaries are absent and I am routinely disrespected.

In the land of disability, prejudice, stigma, and ignorance play out in a myriad of ways. Yesterday, I had a somewhat bizarre encounter. Last week a dear and deeply valued friend hurt her back. After a sleepless night she went to the hospital. Hospitalized for less than a week she was transferred to a local short term rehabilitation hospital. I have visited almost daily and have provided many meals. This is what you do for good friends as the food served at the facility is inedible. Yesterday I visited in the late afternoon. After a short visit I left and that's when things got strange. I left the facility and due to a lack of curb cuts was in the street going uphill to my car.  I transferred into my car when I was suddenly accosted by two official looking men. The following exchange took place:

Men: "Sir, where are you going? You can't leave the facility"

Me: I have a puzzled look on my face

Men: "Sir, are you a patient?"

Me: "No".

Men: "We lose people here. The patients get out and wander away. We are worried about your safety. Can I see your license and registration? Can you prove you are not a patient?"

Me: "I am not a patient. You are not the police and have no right to ask for my license or registration".

Men: "So, who are you? How do I know you are not a patient?"

Me: "I am leaving. Have a good night".

The look on my face was clear. The interrogation was over. The ignorance displayed here boggles the mind. Of course, every person who uses a wheelchair is a patient. People who use a wheelchair are not independent. The ordinary is impossible. Obviously wheelchair users do not visit patients--they are the patient. I am still shaking my head in wonder. How many patients use a fire engine red manual wheelchair? How many patients will break down a manual wheelchair and put it in the back of an Audi? The answer is none. Yet, I was in essence wheelchair man. All wheelchair men are the same. All wheelchairs are the same. In the facility I visited every wheelchair is cheap, black, and wide enough to fit an extremely wide person. If these wheelchairs went outside they would fall apart in short order. My wheelchair is custom made and has a rigid frame. The difference between the facility wheelchairs and mine is vast. The difference is stark--as in a Ferrari versus an old Ford. I wish I could say I am surprised but I am not. This is not the first time I have been asked if I am the patient. The assumption made is basic--I am not an independent or contributing member of society. This is the personification of the medical model of disability. This is as distressing as it is disappointing. What the hell are health care workers being taught?

Thursday, November 3, 2016

On Being Called a Retard

Syracuse is a gritty city. Gritty is code word for poor. Poor people abound in Syracuse. Crime is rampant and often violent. There have been a frightening number of murders the year. There are areas of the city I simply do not enter. Despite all this I like the city. In my area, Franklin Square, industrial chic abounds. Funky examples of the industrial past have been repurposed. My building for instance was once a factory. On my walk to the bus stop in downtown Syracuse I walk along Onondaga Creek and through a few iffy blocks. The bus itself passes through impoverished neighborhoods. It is hard for me to imagine the living conditions for inner city poor people. What I do know is this sort of poverty is wrong and shameful.

There is one thing I dislike about Syracuse--the routine harassment I receive on my way to the bus stop. It is not a daily occurrence but I get hassled by street people and inner city youths who are trying to be tough. I am wary of street people as some can unpredictable. I am a magnet for the mentally ill and have had many unusual encounters. The youths however anger me. I do not fear them. They are wanna be tough guys. They mouth off and want to impress their peers. Since late August when I started using the bus regularly, inner city youths have verbally hassled me on a regular basis. Apparently youths think it is very funny to call me retarded. This only happens when I am alone. I suppose they think I am an easy target. Just the other day about eight youth with long boards decided they lived in a "no retard zone".  These young men went by me as a group and most yelled various themes on being retarded. "Fucking retard", "retard wheelchair", "twisted retard", "butt ugly retard", etc. In the last year I have heard the R word more often than I have in the past. Almost all people I know with a disability have been called retarded at some point in their life. I suggest the resurgence of the R word is partially to do with Donald Trump who famously mocked Serge Kovaleski a New York Times reporter who had a disability. It was shocking at the time. It is shocking in retrospect. It is even more shocking the alt right defend and explain this form of out right bigotry. For instance, Ann Coulter stated Trump did not mock a New York Times reporter. In her book In Trump We Trust, Coulter explained Trump was doing an impression of "standard retard".

Trump denied knowing that Serge was disabled, and demanded an apology, saying that anyone could see his imitation was of a flustered, frightened reporter, not a disabled person. It's true that Trump was not mimicking any mannerisms that Sege has. He doesn't jerk around or flail his arms. He's not retarded. He sits calmly, but if you look at his wrists, you'll see they re curved in. That's not the imitation Trump was doing--he was doing a standard retard, waving his arms. 

I am deeply troubled by what I perceive to be the resurgent use of the R word. Hence yesterday I was shocked to read "Raping the Retard Vote" as part of the North Carolina Voter Integrity Project. See the below disturbing image and link: http://voterintegrityproject.com/reaping-vulnerable-voters/


The title above has been changed to "Reaping Vulnerable Voters" but the content has no been changed. Apparently people with a disability are being "harvested" and their votes commandeered by Democrats. Of course there is no proof this is taking place but in this election cycle truth does not appear to be an important variable. The Voter Integrity Project suggests the following:

First, if you have any friends or relatives who are mentally incompetent and unable to function independently, pay attention to their voting rights.
Second, as an added precaution, please consider filming them as you ask them to discuss the election and whether or not they want to vote. Hopefully you won’t need this footage, but if someone harvests their vote, it will be nice to have the footage in court.
Third, the longer-term solution is to share that video footage with people like us at VIP and we will use that information to influence legislators into stopping the civil-rights raping of the weakest in our society.

David Perry, an astute journalist, was understandably outraged. Perry wrote:

There are moments when something is offensive and one hesitates to give them attention. Then there are acts of offense so great that they must be named, they must be condemned. For me, this piece - even with the less awful headline - falls into that latter category. It reflect an extreme version of the kinds of ableist stigma that we see constantly. This anti-voting-rights group has deliberately called into question the basic competency of people with varying types of disabilities into question. They advocate - presume incompetence, presume suspicion, videotape, report, and shame disabled people. Link: http://www.thismess.net

When it comes to disability society is not discerning. All cripples are lumped together. We are the other. The unwanted other. The ever present other and reminder our bodies are vulnerable. The disabled are to be feared, isolated and shunned. Stigma is rampant as is ableism--an ism hardly anyone without a disability knows exists. This leads me to wonder what might happen to me and others with a disability when we try and vote. Will an ableist bigot take my picture? Will I be filmed? Will a polling worker question my competence? What happens if a person who has Down Syndrome exercises their right to vote?  Will others competence to vote be called into question? What about the elderly? Will they be forced to prove they are competent?

We are in unchartered waters. Instead of assuming competence as Doug Biklen championed it seems we now presume incompetence. The street youths that harassed me do not exist in a social vacuum. Popular culture impacts all members of society and Trump has tapped into a well of anger and hatred. His mocking of a disabled reporter has unleashed ableist bigots who typically hide behind a veneer of Do Gooderism. Flat out hostility has replaced Do Gooderism. I am deeply worried about this. A war is taking place on people with a disability in the United Kingdom via worker assessments performed by ATOS. Will the same sort of war on disabled people take place here? It is possible if not likely. Think about it this way: what if I called the Syracuse police and reported a hate crime. I am without question a member of a distinct and insular minority group. Being called a "fucking retard" is without question hate speech.  Would the Syracuse police have responded? I think not.  I also think most people without a disability would scoff at the notion. And that my friends keeps me up at night.

Monday, October 17, 2016

On Being Haunted

I found the below photograph a year ago. The image haunts me.


The photograph is a polaroid circa 1969. It was taken in June shortly after I started to present significant and alarming neurological deficits. The photograph has resided in a box of photographs I have not looked at in a very long time. I do not like to have my picture taken. I especially dislike any photograph of me standing, walking, running or in any typical biped motion. In fact, I have studiously burned every picture I can find of me standing. After I was born, I had the luxury of normalcy for almost a decade. Between the ages of 9 and 18 I was not so lucky. I had three massive spinal surgeries, spent a year in a body cast, had an untold number of spinal taps, I took prednisone and decadron almost daily. Medical technology was primitive at best. I experienced severe pain of the sort that no human should endure. Pain started in my toes and shot up like lightening bolts into my lower back and exploded like the grand finale at an epic fireworks show. This could go on for hours or days. I developed fevers that shot up to 106.8 f. I shook violently for hours and sometimes for as long as a day. The spasms in my back were so severe that my skin turned red and all the valium in the world could not get my muscles to unlock. I learned to embrace pain like a long lost lover. Pain has been my companion since I was a boy. We get along well. I cannot imagine life without my buddy pain. None of this bothers me. It was and remains a part of life. My life was one in which hospitalizations were the norm. Wards of 16 morbidly sick children were my home away from home.  Scarsdale where my family lived, I quickly learned was fantasy land. In the famed Babies hospital I learned a different reality. In the winter saw men sleeping on the streets on card board boxes over the subway grates. I saw poverty out the hospital window over looking Broadway. I saw the gritty reality of Harlem. My peers told me about their dysfunctional families. I saw kids get a terrible diagnosis and was shocked that their parents never returned to visit them. Suffice it to say, I went through the medical mill. I suffered in a Biblical way. And thankfully my experience is a part of medical history. No child today will experience what I did.

The photograph above haunts me. It does not haunt me because of what I endured as a child. It haunts me because of what was about to take place. To this day, I vividly recall the back yard in the photograph. To the left would have been the large brick house I grew up in. It had a slate patio and screened in porch. To the right were woods and a steep hill. As I look forward there was a large red maple tree. In the woods stood a huge poplar tree I loved. I recall the striped red and blue shirt. It was my favorite.

The photograph haunts me because society killed the sweet little boy I once was. I am no longer sweet. I am no longer innocent. I am no longer young. I am a badly damaged man. I am inherently wary of bipeds. I trust no stranger. I assume the worst of others. I have been spit on, pissed on and disparaged on a regular basis for nearly 40 years. Ableism is very real and it is lethal. An unfathomable number of people with disabilities have been killed by a society that is indifferent and often hostile to the existence of people with a disability. When paralyzed at 18 years old in rehabilitation I saw depressed men disappear. Depression was not permitted. The depressed were shipped off to locations unknown. I am haunted by the thought of where did these men end up?

I have survived and thrived because I refuse to ever back down when confronted with baseless prejudice. Disability based prejudice abounds. Prior to the ADA, I had no rights. I did not have the right to a public school education. I did not have the right to get on a bus--any bus. I could not get on an air plane. I was deemed a flight safety risk. I could not legally go to public school until 1975. I was deemed a fire hazard. It certainly did not help that my mere presence was thought to be too upsetting to other children. The only sanctuary I had was my home and the hospital. To this day that feted smell one encounters when entering a hospital smells like home. I take a big deep gulp of air into my lungs and feel at peace. There were no bullies in the hospital eager to torture me. No one wanted to hurt the kid that was going through the medical mill and whose survival was iffy at best. I was with my people--sick children whose bodies were failing in a myriad of horrific ways. Most of the kids with severe neurological conditions died. I never talked about the future. I did not expect to have a future. I did not think I would be an adult. The toughest birthday I had was when I turned 21. I thought to myself--what am I going to do? I am going to become an adult. I was paralyzed and medically stable. My existence I quickly learned was an affront to typical others. Everywhere I went I was a problem--that is if I was lucky enough to find a building accessible. I was refused service in a multitude of restaurants. No wheelchairs I was told. I was told by professors that I was wasting a spot in the class. A non disabled student was far more deserving of an education. I was told repeatedly that it was unreasonable to think I could be employed. The bar was set low for a crippled man such as myself. I was ejected from more than a few sporting venues because they lacked any semblance of handicapped seating. I was once taken out of Yankee Stadium in handcuffs because I over turned a television camera. Many television cameras had replaced handicapped seating for the World Series. I was angry. I am still angry. I am a human being not a problem.

Yes, society killed the sweet little boy pictured above. I am wary of all others. I am certainly no longer sweet. I am a bad cripple because I have been forged by disability based bigotry that remains rampant today. No longer am I told "no wheelchairs". Instead bipeds lecture me about how Grant Auditorium at Syracuse University is minimally ADA compliant. Overlooked is the fact hundreds enter Grant auditorium via stairs and sit where ever they desire. I am relegated to the disability ghetto all the way in the back in a far off dark corner. No one wants to hear about the utter lack of accessible housing. When I want to move delete 95% of all housing options. I do not visit friends homes. No one lives in an accessible house and that includes my siblings. The barriers I confront, both physical and social, are overwhelming. The little boy in the photograph had no worries. That boy wanted to be like Tom Seaver and pitch in the major leagues. That boy got on a school bus and went to public school. When that little boy was paralyzed in 1978 after a decade of enduring the medical mill society killed him and created a different human being. You reap what you sow. In the King James Bible I read "Be not deceived; God is not mocked: for whatever a man soweth, that shall he also reap". I am far from the only bad cripple. While I lost much bodily being paralyzed, I have gained and become a thorn in the side of bipeds and typical others. I have gained much. I have a people--disabled people. We form a disenfranchised minority group. Our rights are protected by the law. The laws that guarantee our civil rights are not valued nor respected. The law is broken on a daily basis. And thus I am one of many who fight back. To me, this is called disability gain. More than just having a people, I have met unique humans with very different bodies and means of thinking and ways of navigating the world. We know we are unwanted. We don't care. We know we are not a problem. We are human beings with inalienable rights. Violate those rights and ableists will reap what they sow. This is what happens when a person such as myself is forged by disability based bigotry. That sweet little boy has grown up to be a hard man forged of steel.