Stand Ins: Jennifer Johannesen and Others Without a Disability

I am routinely the only wheelchair user when I socialize with friends or meet with professional colleagues. I cannot help but be aware I am different--atypical. My experience as the sole cripple is a constant and takes a mental toll.  As Kermit the Frog would say "it's not east being green".  Green I am. Different I am. Apart I am. Excluded. Belittled. Demeaned. Welcome to my life. Does the fact my life is often perceived by others to be less valuable bother me? Absolutely. When I feel overwhelmed and socially isolated I stop and think. I force myself to acknowledge that I am very lucky. The vast majority of people with a disability encounter far more prejudice than I do--especially those with profound cognitive and physical disabilities. This approach helps but does not change the fact I am far too often alone. My difference is impossible to ignore.

I can only conclude that the vast majority of people without a disability are quite content to avoid me. I also know disability is feared. Well are the one minority group that can be joined instantly. An unsettling thought for sure and the source of much gallows humor among physicians in training. When it comes to disability separate is apparently equal in the estimation of people with no knowledge of disability.  Disability history is rife with exclusion in a myriad of forms. Atrocities in the form of death, unimaginable brutality, and horrific physical abuse are constant as well. This history, the dirty side of disability is not taught and largely unknown outside of disability studies. Few people not directly touched by disability want to talk about disability Jennifer Johannesen is an exception. Link: http://johannesen.ca/2014/02/i-thought-i-knew-everything-already-part-2/ In "I thought I Knew Everything Already (part 2)" she wrote:

 no one wants to deal with people with disabilities. In [Peace's] words, no one gives a shit. For many of us, it’s an uncomfortable experience to be in the presence of obvious difference, perceived vulnerability, awareness of societal failure. And more importantly, we don’t have the time or patience or interest to understand how they are impacted by our discomfort. We don’t want to know how society has failed them. Those who are angry or frustrated are especially easy to ignore.  

I am often placed in the "angry" category and am accordingly easily silences. Johannesen is correct in stating it easy to ignore angry people. No person without a disability wants to acknowledge they are part of a socio-cultural system that purposely excludes people with a disability and utterly fails to provide adequate social supports. But this is the world we live in.  The so called social safety net is in tatters, stripped to the bone. Worse yet people with a disability are hopelessly splintered. Deaf people advocate for qualified interpreters. I advocate for ramps and elevators. People who care for loved ones with profound disabilities advocate for social supports in the form of well trained and paid personal care workers. What is totally absent is a unified front. I cannot help but note the irony here--the medical model of disability is inadvertently used to splinter disability rights and advocacy.

Not all people that support disability rights have a disability.  People such as Jennifer support disability rights as do many others in and outside of academia. I find this support gratifying. Frankly, I will take support from one and all. I find Johannnesn's words fascinating as it highlights the individual toll and ethical conundrums that arise for a person without a disability that supports disability rights. Thus I found the following striking:

I think I am often invited to speak as a convenient stand-in – or I should say, I offer myself as a convenient stand-in – an articulate, dispassionate speaker without an axe to grind and who doesn’t make anyone uncomfortable...

I, on the other hand, am a quintessential good Canadian. My ease with speaking, the ‘tie it all up in a bow’ sort of way I summarize massively complex and nuanced ideas, the lightheartedness with which I can share adorable photos of Owen now that it’s all over – all of these things help make disability consumable and palatable. I now see my complicity in crafting an easy persona to suit public sensibilities. The audience and I can pat ourselves on the back for doing good work, and in the meantime Bill still can’t get in through the front door.

Consumable and palatable I am not. When I read those words I was stunned; enlightened but stunned. Johannesen is particularly insightful. I know there is a profound difference between use. My presence require work and thought because the world is not designed for people like me. I get that symbolically my presence alone carries weight. But the idea in an academic setting my presence makes others uncomfortable enabled the veritable light bulb to go off in my head. I suppose I just refuse to believe more than two decades after the ADA was passed into law I would have such an unsettling influence on others. This in part explains what took place at William and Hobart Smith last Fall when a conference ostensible about disability was no accessible. Link: http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.html  Among the apologies I received from the organizers the most common word utilized  was mistake.  Did a "mistake" happen. No. No mere mistakes were made. To deem the lack of access and obvious lack of thought was no no mistake. To deem it a mere mistake negates the fact my civil rights violated. The college broke the law--federal law. If black participants were asked to enter through the "white only" door would this be deemed a mistake? Not a chance. It would cause outrage and be considered a gross violation of civil tights legislation. This connection was never made by the organizers--people supposedly concerned with disability rights issues.

Johannesson really hit the nail on the head. A person without a disability speaking about their experience caring for a child or adult with a disability is far more palatable. And what can Johannesen and others without a disability do? I do not know. This is an ethical dilemma I have never confronted. This dilemma has increased my already considerable respect for those without a disability who advocate for disability rights.  Thanks to Johannesen I better understand why many people without a disability identify themselves as such before they talk about disability. A comment in the past I felt was not necessary.

I have Icicles!

This is what I see when I walk out my door. I have icicles that go from my roof to the ground. A good eight foot long icicle.  As long as the water remains outside of my home I am a happy man.

Journalistic Ethics: An Addendum to the NYT Deconstruction

The day before the NYT article was published that I just took to task Mr. Mitton posted the below to his blog Death with Dignity. Link: http://dying-with-dignity.blogspot.com A hyper link to Mr. Mitton's blog was included in the NYT article. Eckholm however does not label the link or give url for the blog. I find this unacceptable given the fact the entire article relied on Compassion and Choices and the words of its president Barbara Coombs Lee. I am not at all surprised Compassion and Choices are now using and exploiting Mr. Mitton for their larger political goals--the passage of assisted suicide legislation. Read the below and explain how Compassion and Choices is the ethical organization it presents itself to be.


I find it amazing that within minutes of the New York Times posting my article online that Compassion and Choices glommed onto it like it was an article all about them! They are the very people/organization to turn their backs on me when I went to them for help in making my statement. They told me to go away and now they want to claim this article as theirs. No question this pisses me off! C&C’s Facebook post

In all fairness, they should have said on their Facebook post that Compassion and Choices decided to completely turn their backs on me and my situation! As soon as the news broke of dying with dignity in New Mexico, I started to research how it happened. It was a lawsuit brought on by C&C and the ACLU. My next step was to contact both. I had no problem getting in contact with C&C but I’ve not been able to make a dent getting through to the ACLU. I wanted to be someone that could do a little hell raising and speaking out about my situation before I pass.

I told them my plans of how I am not about to wait out the last moments of death before going, that I was going to go on my own terms. Though I qualify for hospice care, I am passing on it. The help that I would get from a hospice is something that I just won’t be needing. When I can no longer cook for myself, get up and down the stairs to my apartment, and/or use my Mac/software is when I am going to go, after eating a very nice last meal.

A couple days later I get a phone call from Pamela Mottola of C&C stating that in order for us to work together that I would have to agree that I would only starve myself to death as my form of dying!!! AYFKM!!!!

Everyone that I have told that story to, my friends who know me first show rage, then amazement and then end up laughing because of the insanity of it all! I am an ultimate foodie! I live to eat and food is about the most important thing in life. At least for me it is! To suggest that I starve myself to death is about the most bizarre and upsetting thing that I have had to deal with as far as this situation goes in a long, long time. It was truly an insult to me and I let Pamela know exactly this. The next day C&C quote “this effectively ends our relationship”. Yet minutes after the article comes out about me today, it is C&C that is trying to glom onto this article like it was about them.

Yes, they do serve a purpose. They helped New Mexico for sure. But it is not helpful for them to try to find puppets to die the way they demand the person die in order to get their help! That is EXACTLY what happened in my situation! No! This is a matter of choice! My choice! Not theirs! No one is going to be able to enforce their way of my dying my death. Not the State of Colorado and not Compassion and Choices.

Compassion and Choices turned their backs on me yet it was my face and my cat that was their last post on Facebook. They should have been fair about this and posted that they already were well aware of me! Now they ought to just keep it there and accept the flack the they might get.

NYT Bias: The Unethical Support for Assisted Suicide

A few days ago the New York Times published an article on its front page, “Aid in Dying Movement Takes Hold in Some States”, by Erik Eckholm. Link: 

http://www.nytimes.com/2014/02/08/us/easing-terminal-patients-path-to-death-legally.html?hp&_r=0 As an opponent of assisted suicide, I cringe when I read most articles published by the NYT that discuss end of life issues. I bemoan the lack of journalistic rigor, questionable ethics, and sloppy language used by Eckholm and many others who have published articles in the NYT on end of life issues. For the last week I tried to ignore what Eckholm had written. Yet I was and remain angry. I am not angry at Eckholm or the NYT. I am angry for the people who read this article and thought it was “fair”. There was nothing “fair” about this article. My anger does not stem from disagreement. I am happy to engage those I disagree with and do so on a regular basis. What angered me was how grossly one sided the article was. Those unfamiliar with the heated debate surrounding assisted suicide will completely miss the fact the article and author are grossly biased.  For instance, Eckholm wrote Compassion and Choices, the leading advocacy group for assisted suicide, believes “giving a fading patient the opportunity for a peaceful and dignified death is not suicide”. Out of context this appears to be a given. We all have the right to die with dignity. We want to insure people in their final hours have a peaceful death. We all want a compassionate end of life. We all care about the elderly, disabled, and terminally ill. We do not want these people to suffer. Eckholm presents assisted suicide as being about the milk of human kindness.

Stop the emotional gravy train. Think, really think about the implications of assisted suicide. Dig a little deeper, read a few articles by ethicists, and it will become very clear death is a complex subject. Few die at home surrounded by loved ones. Most people die in a hospital. Given this, the end of life issues cannot be constricted the individual level. Death is part of the health industrial complex. We do not die in a social vacuum. We die in institutions called hospitals or nursing homes. Articles such as the one by Eckholm rely heavily on the individual and anecdotal evidence to promote assisted suicide. Thus I balk when Eckholm presents  Compassion and Choices as the sole arbiter and advocate for a compassionate  and peaceful end of life. Those unfamiliar with Compassion and Choices and the complex issues families face when end of life approaches are easily swayed by emotion. Who could be opposed to good end of life care? Only religious zealots or bitter crippled people like me who want to impose their suffering on others (these words are often thrown in face). I am told “just because I made a decision to live my life with a disability does not mean others are capable or desire to the same thing”. Following this line of logic, I am a narcissist who does not care about human suffering. We all know people with a disability suffer. I am suffering. It is what we crippled people do. I do suffer but do so because of the deep stigma associated with disability. My “suffering” is socially created by ingrained disability based bias and bigotry. The sad fact is most people without a disability, and certainly the vast majority of those working in the health are system, cannot imagine my life and the life of all those with a disability is valued. We crippled people lead a good life in spite of the hostile social and physical environments we must navigate.

Eckholm and others who advocate for assisted suicide conveniently ignore the above. Eckholm follows a well worn script. They typically follow a three step process. First, quote an obscure religious leader who is opposed to assisted suicide. In this case Eckholm quotes  Archbishop Michael J. Sheehan of Santa Fe, NM who stated “the church teaches that life is sacred from conception through to natural death”. Conception nor natural death are not defined but the suggestion is such a notion is based on religious orthodoxy and not science.  In addition the Archbishop ominously foresees assisted suicide legislation could have “dangerous consequences”. These is no mention of a single non religious disability rights organizations that also points out the inherent dangers to assisted suicide legislation. Step two, find a person with a disability or someone facing the end of his or her life that can be exploited and used to push for assisted suicide. Paint a grim picture of this person’s perceived quality of life. In this case Eckholm used Robert Mitton, a man “with a failing heart”. Mr Mitton does not want to endure another brutally painful surgery. Colorful or overly emotional language is used to derail sober analysis. For example, Mr. Mitton was told by doctors “the only way to take care of this is to rip me open again and that’s not what I’m going to do”. Mr. Mitton, cue the melancholy music, wants to die in peace. Mr. Mitton believes a dignified death “should be a basic human right”. Step three, quote someone from Compassion and Choices. In this case it is the president of Compassion and Choices Barbara Coombs Lee who maintains “there is a quiet, constant demand all over the country for a right to die on one’s own terms”.  The conclusion is not hard to reach: who in their right mind could oppose assisted suicide? 

The emotional and anecdotal approach to end of life care or so called aid in dying is presented in a way that appears to be fair. The formula concocted and utilized by Eckholm and others does not permit a person such as myself or any disability rights groups for that matter to enter into the discussion. Systemic social analysis is effectively derailed. We crippled people, however, upend the legal and social band wagon. Our existence, an existence we value, causes too much discomfort. Worse, we people with a disability are articulate and organized. We point out in no uncertain terms that our lives are worth living. We point out all lives are worth living. We are not religious fanatics. We are merely human. We crippled people are human as are the elderly and terminally ill. I am human. Our bodies are different. As a result of our bodily difference, symbolically we represent a threat to others—typical others who fear death and disability. Let me tell you there is nothing to fear. We will all die. This is a given. Death is not a human right. Death is the fate all who are born will inevitably face. Human rights are about living. Living these days is not easy. Not when social supports for the disenfranchised are cut to the bone. It is not easy to live when food stamps are cut and too many people cannot afford to pay rent and eat. It is not easy to live when one cannot afford health care insurance or pay for prescribed medications. If we are going to have an emotional discussion let’s discuss why life is so hard for so many. Let’s discuss what drives a human being to believe their life has no value. 

Worse Off

On my drive home from Syracuse yesterday I stopped for gas. In the last year I have learned where the best gas stations are located. For me the best station means easy on and off the interstate. An accessible bathroom that requires the curb cut to be cleared of snow and entrance not be blocked. I treat myself to some junk food--the sort I can eat without causing my stomach to rebel. These modest requirements eliminate about 50% or more of the gas stations I drive by.

Yesterday in a rural area of central New York I stopped for gas at one of my trusted stations. I struggled to get the pump to work. I could not quite see the small electronic screen on the pump. I swiped my card a couple times without success. I gave up and tried to get into the station. Several inches of ice made it impossible to get up the curb cut. Annoyed I was going to give the pump one more try and if it failed go to a different station. Thankfully the pump worked. As my tank was filling up a female employee came out of the station to see if I needed help. This woman had a well worn face. A sad face that revealed she must have led an exceptionally hard life. She could have been 35 or 65 years old. She told me "I hear you need help. Sorry I was in the back and did not see you" (so much for anonymity).  I replied I was fine, thanks any way. I could feel the hairs on the back of my neck going up. I was trapped and knew what was about to be said or take place was going to go badly. As if scripted, the pump clicks off and this woman proceeds to tell me in far too much detail exactly what was wrong with the pump. The more she talks the more obvious it is she is drug addict. The sort of addict that is at the end of her rope. Thanks to my newly found interest in the TV show Breaking Bad I realize this woman is a meth amphetamine addict.  As she speaks to me it is clear she has Meth Mouth. The tooth decay was severe--the worst I have ever seen. By itself this was disturbing. It is not every day you see someone whose entire mouth is filled with rotted or missing teeth. Her addiction was obvious as was a sense of desperation that oozed from her mere presence. She insisted on "helping" me. She told me "God knows I could be worse off than you. I got troubles too. I could be as bad as off as you at any time". Pause as she puts the hose back in the pump cradle. She turns and tells me "Who is going to help me? No one. Yes sir, I am going to be way worse off than you. It is going to happen. I need karma. If I help you maybe someone will help me when I am bad off. You are really bad off. I know I will be too".

The look of defeat in the eyes of the woman I met for just a few moments was haunting. She was physically alive but had long since died inside. Her soul was lost. And I wonder why? Why and where did her life go wrong? Defeat and hopelessness was inscribed on her face. She used me, "helped me", as some sort of good will effort to enhance her future prospects. She did not need me. She needed a shaman. Here I sit a day later and wonder who will save the lost souls of this world and selfishly worry about my own soul. I will ponder this exchange for quite some time.

Lives Worth Living: The Watson Symposium at Syracuse University

On April 4 Syracuse will be hosting a one symposium entitled Lives Worth Living. Organizing this symposium with the outstanding help of the Renee Crown University Honors office has been part of my job this semester as the visiting Watson Professor.  I will be speaking on April 4 as will Brenda Brueggemann, Barbara Farlow,  and Sheri Fink. This event is free and open to the public. Spread the word! It is going to be an exciting day for me and all involved.  Link to the agenda: http://watsonsymposium.syr.edu Cannot help myself but here is a photo of me and the lady of my life.

Fighting Back

I had a long week. I did my usual Syracuse routine--kind of. I extended my stay in Syracuse one day to get caught up with work. I planned to spend Wednesday night in Toronto with a friend and a give a talk at Western Ontario King’s University College. Plans changed as the major snow storm on Wednesday made the roads too treacherous to get to Toronto. I found a cheap motel near the border and reveled in the silence and beauty such storms bring. Below is what the interstate looked like before the conditions got really bad. 

At a personal level this trip worried me. I was returning to London Ontario for the first time since last fall. London, I once thought, would be the place I would live happily ever after. This was not meant to be and I am relieved my worries were misplaced. I felt exactly what I had hoped I would feel entering London. Nothing. This was merely an ordinary trip, one of many I have made in the last year. Perhaps ordinary is the wrong word. Ordinary and travel when one uses a wheelchair are usually incompatible. Something always goes wrong when I travel--it is the norm. This trip it was the hotel. Despite three emails confirming the room I requested was accessible when I arrived at the Ivey Spencer Leadership Centre there was no record of such a request. I was told all handicapped rooms were occupied. The usual confusion commenced. Much head scratching took place. Many sorries were expressed. Phone calls were made. Managers were sought out. A great deal of time was spent looking at a computer screen. After more than 20 minutes an accessible room was found in the north wing. But the north wing I was told was remote. This word fits as the "leadership centre" is a corporate retreat set on thirty acres. 

I suggested I look at a typical room and the supposedly accessible room. After a long walk to an obscure part of the hotel's north wing I am shown the accessible room. With my hotel employee escort I enter the room and laugh. The room is very small as in the size of a small single dorm room. But what makes me laugh is the bathroom--it is grossly inaccessible. The bathroom door opens inward and blocks any possible access to the tub (a roll in shower is  pipe dream). I am presented with an accessible room circa 1978. A grab bar is next to the toilet. That is the start and end of wheelchair access. Even the hotel employee is stunned and acknowledges the room is not in any way accessible. We retrace outsteps to the main desk to look at a typical room. It is more accessible than the designated accessible room. By accessible I mean I can enter the bathroom but any transfer in and out of the tub or on the toilet is going to be an adventure without grab bars. At this point an hour has passed; I have not eaten, and I am not inclined to start driving around looking for another hotel. I take the typical room knowing the university is spending $100 put me up in a hotel I cannot take a shower in. Welcome to my world of "routine" travel. 

My talk went well. I met with Pamela Cushing and her class. I was tasked with discussing media representation of people with a disability in advertising, specifically commercials. The student were excellent. They were engaged and had clearly done the required reading. They asked interesting questions and I was thrilled to be exposed to Canadian university students. Much of out time was spent discussing two commercials: one I liked and one I dislike. 

First the add I disliked as it falls into the category of "inspiration":

I have not deconstructed this commercial for two reasons. First, Rachel Cohen Rottenburg beat me to it. I am thankful for this because I know after she critiqued the commercial she got a lot of severely critical comments. See: http://www.disabilityandrepresentation.com/2013/09/04/3087/  Second, the commercial with a few changes could have been a classic and as such it is a wasted opportunity. 

The second commercial features Derrick Coleman the only deaf football player in the NFL.

 

Once again Rachel Cohne Rottenburg beat me to the punch. I urge you to read her analysis of the commercial. See: http://www.disabilityandrepresentation.com/2014/01/17/the-new-derrick-coleman-duracell-ad/  Like Cohen Rottenburg I was struck by the word play. Not an ounce of inspiration exists in this commercial. The line that resonated with me was "They told me it could' be done. That I was a lost cause. And picked last". This will resonate with every person I know my age with a disability. We were repeatedly told what we could not do do. Physicians always compared us to a norm that was impossible to obtain. Teachers told us we were "special" and did not have to study. Our typical peers took delight in torturing us. Rocks were thrown at the blind kid. I was "ironsides", belittled and laughed at. We pre ADA cripples fought back. We did not listen to others who told us all that we could not do. We rejected the mainstream and normative assumptions. We did not overcome our disability. We overcame the stigma and spoiled identity associated with disability. In a multitude of ways we spearheaded legislation designed to protect our civl rights.  None of this made us popular. As I made the long drive home yesterday from Ontario I thought a lot about how can I foster social change. How can I insure the rights of people with a disability are respected? How can I help not myself but the next guy that will encounter a physical or social barrier. I struggled with this notion and at one point decided it was hopeless. Then I got mad and thought I will not buckle. I will not go quietly into the night. Other people with a disability fought back. Wars I know start with minor battles. This in turn made me think back to one of the first pitch battles to make buses accessible. In Denver a group of about 60 people with a disability started a movement that would sweep the nation. Only July 5, 1978 at busy Denver intersection 45 people, most using wheelchairs surrounded city buses in protest. For the first time people with a disability let it be known we were taking equal access seriously. Part of that seriousness involved access to reliable mass transportation. This protest took place a few months after I was paralyzed. I owe these men and women a great deal. When I was in Denver a long time ago I went out of my way to pay homage to what became known as the "gang of nineteen". A small plaque exists:

When discouraged I find inspiration in the acts of other people with a disability that like me reject all they have been told about what cannot be done. This is not a minor difference but rather reveals a significant cultural divide. I do not care one iota about what I cannot do. I am only concerned with what I can do. When I see a person with a disability I do not think about what they cannot do. I think there goes a hard ass survivor. I wonder what has that person accomplished and how did they do it because I know all to well it was not easy. I revel in the presence of a person that has a cognitive disability and works hard to express themselves. I admire people with Autism who somehow tolerate over stimulating social environments yet endure so they can make a difference at a crowed Massachusetts State Courthouse. What we all share is the refusal to accept dominant social cultural norms that would isolate us into socially sanctioned and separate places to live and work. I refuse to accept tho as should all people disabled or not.