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Friday, August 12, 2016

Levels of Disrespect

I have lived in the Franklin Square area for two months. The move has been great for me. I doubt I could have survived in my old place because it had no air conditioning. Urban life appeals as I walk all over the city of Syracuse. The city is gritty. I like Syracuse gritty. Industrial era buildings are being repurposed and turned into apartment buildings. Even those buildings that have not been renovated have a certain charm and provide a nod to long gone industrialism that dominated city life. I live in a building that was once an iron factory. I often wonder about the people who worked in this building. What would they think the once mighty industry is gone and repurposed into an apartment building?

In my estimation, the immediate area where I live is a model of development. However, there is one problem I encounter daily. The curb cuts that abound do not remotely meet ADA standards. They are brick and steep. This does not usually present a problem but I do wonder about the winter. I assume I am going to be doing a lot of curb cut snow shoveling. I don't mind this. What I do mind is depicted below:

Without question, curb cuts around me are not well marked. I use this curb cut every day I go outside and I am outside at least three to four times a day. Every day, and I do mean every day, curb cuts are blocked. There is a popular coffee shop on my corner and everyday this curb cut and many others are blocked by parked cars. This is not a rarity, it is the norm. Aside from cars, every imaginable delivery truck also blocks curb cuts. In gritty Syracuse a host of curb cuts are either entirely absent or in such a state of disrepair they are not usable. Every day I end up in the street. Today is was a clean VW jetta station wagon. Yesterday it was the absence of a curb cut. The day before it was a blocked off sidewalk. And the day before that is was a mail truck. A variation on this theme are cars that block the pedestrian crossing at a red light. This means I must meander into incoming traffic to get around the car.

The skeptic is thinking: get over yourself. The person that parked the car depicted above just went to get a cup of coffee and did not notice they blocked the curb. This is likely true. The same can be said for a myriad of delivery men who are pressured to make a certain number of deliveries per day. Excuses abound. Let me frame this differently. Why do people not notice curb cuts? Why do really nice people not notice? The answer is they do not care. Curb cuts are not valued. The people who use curb cuts are not valued. Those that are not valued include a host of people. I know my life does not in the estimation of many hold any value. Just today I read about a woman in California who was among the first to legally access assisted suicide. She wrote: I am losing strength in my arms and hands quickly. I don’t want to live out my life paralyzed, eating through a tube in my stomach and communicating through a machine. I’d rather be free than entombed in my body. I find such statements shocking. By extension am I "entombed in my body". The answer to this question is yes. This takes the devaluation of my people to a level that is a direct threat to my existence. These words make me wonder when will another mass murder that took place in Japan happen here. 

Again the skeptic objects. How did you get from a curb cut to mass murder of people with a disability? Ableism is a spectrum from the innocuous to murder. Ableism exists because we see any and all things related to disability as a perk. Donald Trump crows he has given millions to the handicapped and made all his buildings accessible. Bull. He made buildings accessible because it was required by Federal law. So called "reasonable accommodations" are rarely if ever framed as a matter of civil rights. Ableism exists because ignorance with regard to disability is rampant. Like the blocked curb cut, ableism is encountered daily. And oh how typical others love to rail against the ADA. People have made journalistic careers undermining the ADA. Last week I read about a man in California that had filed hundreds of ADA complaints against small businesses. He is making money off the ADA proclaims those being sued. I don't like these people any more than typical others. But stop, please stop. Think about it. If ADA violations did not exist corporations and small businesses could not be sued. ADA fails abound. ADA fails are everywhere. I see them daily and simply shrug. I shrug because typical others don't care. As Mary Johnson wrote he her book Make Them Go Away, no one wakes up thinking I will be an ableist bigot and discriminate against people with a disability. Yet this does not mean typical others do not discriminate against people with a disability on a regular basis. I have sat through an untold number of meetings about access issues. I am typically the voice of dissent. I make people uncomfortable. Yes, typical others will cluck about being inclusive but when it comes down to the bottom line, meaning money, access is the first line item cut. It is the easiest cut to make. It is easy because typical people do not value the inclusion of people with a disability. Oh they will cluck about it for sure but in reality inclusion is seen as a choice. We will be inclusive if inclusion is not too costly. Health insurance companies produce glossy ads that depict the vulnerable such as the elderly, ill and disabled but will fight tooth and nail to provide the least amount of treatment and purchase substandard wheelchairs.

The photograph above and blocked curb set me off today. I know where I rank. I hate it with passion. I have spent my adult life fighting the good fight. I will continue to fight. This fight is not about me. The fight for equality is about the person walking around today who by bad luck or happenstance acquire a disability. Yes, I fight for the ableist too. We cripples are after all the only minority group one can join unwillingly. The next time readers are in a position of power and see access issues get short shrift I suggest this is not in your best interest. Let that little idea sink into your craw.

Wednesday, August 10, 2016

States Worse than Death: I Don't Think So.

JAMA Internal Medicine has been in the news and references to a recent article abound on various social media platforms. Here I refer to "States Worse than Death Among Hospitalized Patients with Serious Illnesses" by Emily Rubin and other researchers at the University of Pennsylvania. Over eight months a team of researchers surveyed 180 patients who had been admitted to a hospital in Philadelphia with serious illnesses that included heart and lung disease. All the patients interviewed were 60 years and older. The study was conducted between July 1, 2015 and March 7, 2016. None of the patients had limitations on any life sustaining treatment in their electronic medical records. Researchers asked these patients to hypothesize whether they would prefer to die than be in a progressively worse state of being. In typically terse language Rubin wrote:

Death is a patient-centered outcome because nearly everyone wishes to avoid it. Despite this general preference, however, studies among healthy outpatients and those with serious illnesses show that a significant minority, and sometimes a majority, rate states such as severe dementia as worse than death. Link:

What conditions were patients asked about? Conditions that were deemed worse than death include:

Bowel and bladder incontinence.
Relying on Breathing machine to live.
Cannot get out of bed.
Confused all the time.
Relying on a feeding tube.
Need care all the time.
Living in a nursing home.
At home all day.
Moderate pain all the time.
In a wheelchair.

Below is the chart:

As the above demonstrates, about 70% of patients identified bowel and bladder incontinence, reliance on a breathing machine and the inability to get out of bed as a fate worse than death. 60% indicated being confused all the time and 55% for reliance on a feeding tube and 50% for needing around the clock care were fates worse than death. Other fates worse than death were in a wheelchair, constant moderate pain and being unable to leave home--all a fate worse than death.

Here is the kicker: none of the patients had experienced the conditions described as a fate worse than death. Yes, the patients responding to the hypotheticals posed had not experienced any of the conditions described. It seems to me if researches wanted to ask this sort of hypothetical question it would be behoove them to ask people that live with the conditions described. Instead, they did the exact opposite. This makes no sense. It is akin to asking a middle aged white man what it is like to be a black man.

As one would suspect, the study has gotten glowing reviews from those who advocate for assisted suicide legislation. This "data" has been deemed important by none other than the Economist. Under the Right to Die "What is Unbearable: Some Data about an Emotional Issue":

death really can seem preferable to a lifetime of pain and suffering. A growing movement, including this newspaper, thus seeks to legalize--with stringent safeguards--doctor-assisted suicide around the world... Asking people approaching, or threatened with death, how they feel about it, and the moment at which they would like it to come, is a welcome development. Both side of the doctor-assisted-dying debate should pay attention to it.

As an opponent of assisted suicide legislation, I am paying attention. I read the so called "data" and shook my head on wonder. People over the age of 60 were asked a series of questions that was framed as a fate worse then death. Think about what this says about the millions of people who live with these conditions. Let's review the list. I have experience with the following: Bowel and bladder incontinence, cannot get of bed, need care all the time, at home all day, moderate pain all the time, in a wheelchair. In baseball parlance I am 6 for 10. I am not sure I should be impressed with myself for living a life deemed worse than death or appalled by those surveyed. This study was not conducted in splendid isolation. The study relied on fear. Fear of physical and mental decline all humans will experience. Fear of death. This study only muddies the water in terms of end of life care and the distinction between terminal illness and disability. Terminal illness and disability do not necessarily go hand in hand. Years ago I was at a bioethics conference that had a predominance of people with a disability attending. One speaker asked how many people had been deemed terminally ill at some point in their life? Virtually every person in the audience raised their hand. This reminded of Mike Ervin aka Smart Ass Cripple. He was deemed terminally ill. Those physicians that described him as such are all now deceased decades later.

I truly shake my head in wonder when people fiercely advocate for assisted suicide legislation. It is a red herring. Those that fervently advocate for assisted suicide ask all the wrong questions. I struggle to control my bowels and bladder. This can be a messy business. But it is a management issue and not a statement about the quality of my life or the life of others. A breathing machine? Let's play very fast and loose with language. Exactly what is being referred to here? Ventilation support is a wide arc and a vague reference to a "breathing machine" is inherently misleading. Relying on a feeding tube? I know plenty of people who have used feeding tubes for extended stretches and some who are entirely dependent upon a feeding tube. This too is not a statement on the quality of life. Living in a nursing home? When this is used as a reason to believe it is a fate worse than death I consider this an indictment on the industry not the people who end up living in a nursing home. Stuck at home all day? Again why is one stuck at home? It is possible for others to visit and community living is an option. The slogan "our homes not nursing homes" comes to mind. Do I even need to broach the "use a wheelchair issue". Here is a radical idea: provide a properly fitting wheelchair that is ideally suited to a person's needs. If we did that some of the stigma associated with wheelchair use would be ameliorated. Instead, we isolate the elderly for instance in nursing homes and have them sit in a wheelchair junker that does not fit. No wonder this is deemed a fate worse than death.

The answer to end of life issues is not to legislate assisted suicide laws. The answer to providing quality end of life care requires a national discussion. There is no such thing as a good death. This too is misleading rhetoric coming from people who frame death as a right. When I read this study my first thought was people with a disability are being rendered silent. We are absent from the discussion about our life being a fate worse than death. The researchers in this study felt free to imagine what our lives are like. This happens all the time. The experience is surreal. Oh how many times I have had a biped explain disability to me with great clarity and insight that had escaped me the last 35 years. Heavy on the sarcasm here. Just today I read "Academia, Accessibility, Being Spoken For" by Briana Suslovic. Link: She wrote:

It’s a strange feeling to have your own life explained to you in someone else’s terms, isn’t it? When someone else seems to know your language better than you, and then they start translating it into bigger and scarier words, invoking authors you’ve only heard about at cocktail parties, turning your experiences into a case study for fellow scholars to feast upon. That feeling, that dissection, that intellectual erasure-while-remaining-in-the-room… it’s so hard to describe that to someone who hasn’t been through the incredibly de-humanizing experience of being told about yourself in terms you don’t quite understand.

Bravo Suslovic. This is exactly what those that advocate for assisted suicide do not want to hear. They want to render those living a life deemed "a fate worse than death" silent. Advocates that champion a so called good death impose their imagination on our reality. In reality our lives are quite good. If you want to know how to manage incontinence give me a call. If you want to know what it is like to be dependent upon others give me a call. If you want to know about moderate pain, give me a call. Exactly who is the expert here? 

Lastly, please do not talk to me about safeguards in assisted suicide legislation that the Economist mentioned. All the safeguards in the world are not enough. Safeguards exist for a reason. Some lives, lives such as mine, are framed as a "fate worse than death".  This makes me vulnerable. This makes many people vulnerable. I cannot speak for all people with a disability but I can say with certainty I fear accessing medical care. I fear serious illness. I do not fear the pain of being ill. I do not fear how dehumanizing being hospitalized can be. My fear is different. I fear the do gooder physician. I fear the silent assumption my life is indeed considered a fate worse than death. I fear the kind, loving, and compassionate physician that will decide I have suffered enough. I have met one such physician. I also know there are many more that exist. Please be skeptical of the data considered here. I can speak for myself and others too. We just need typical others to listen. I assure you the quality of my life is quite good. I can say the same about all those I know who have adapted to life with a disability. All typical others need to do is to read what we write about our experiences. navigating a hostile world. And please don't worry this bad cripple does not bite.

Monday, August 8, 2016

Addendum: Bad Versus Good

Tomorrow the forecast predicts temperatures in the 90s. I desperately need paper for my printer so I took a very slow walk to downtown. As I got to the edge of the city some tough looking teenagers decided I was an easy target. They openly mocked me and my pushing motion as I was going by. Not content with this they started calling me "retard" and asking if I could speak or do math. One guy yelled "hey retard what is 2 plus 2". Apparently this was hysterically funny. I was not impressed and gave them a middle finger salute. Then things got worse.

I wanted to treat myself to a hot dog at Liehs & Steigerwald and maybe buy a half a pound of bacon. Since I moved to Franklin Square I have become a regular customer. I love all the sausage they sell. The sandwiches are nothing short of awesome. I buy their bacon too as I can no longer eat the fat supermarkets sell called bacon. Suffice it to say I love their food. Today, however I had a run in with an employee. This is not the first time the woman has been nasty to me. In the past she had put an illogical sign outside as some sort of joke. It was not funny. I was not impressed nor was my son and another friend. We said something, our words were not appreciated. We were seriously annoyed. After we ate I told her we did not order beer because of the sign and her attitude. She did not care and got snippy as in major attitude. I had a subsequent run in with her. Needless to say she will not win employee of the year award. Today however she got particularly nasty. As I went to enter she stood in my way and stated "I will hold the door for you".  I replied "I don't need help". Things went south fast. She was angry and annoyed. She had a serious attitude. In her estimation I was your archetypical bitter cripple angry at the world. She let me know this. "Gee, all I was trying to do was help". She made this remark in a tone that was clear she was exasperated. Other employees looked up. Her body posture was one of a waiter dealing with an impossible customer. We exchanged a few words. She went from fake nice to nasty in seconds.

My crime: I was not the dutiful meek cripple she created in her head. I was not the charity case she imagined. I was all too real and not pleased about being demeaned. I refused to meet her expectations and pushed back and against the charity model of disability. I was the less fortunate human being. In seconds I went from being the good cripple to a very bad cripple. I said so too. "You are snotty and rude". This resulted in louder huffing and hawing. At this point I am angry. "Great, now you have lost my business." I said this loud enough for others to hear. I spun on a dime and walked out of the shop.

My dilemma is how bad should I be? Given this is my third run in with this employee, I think the owners should know. More to the point, I want to eat more sausage, sandwiches and drink their beer. However I will not be harassed and demeaned. If I complain to the owners who know me by sight I think there is a chance she might get fired. I must confess this would not bother me. The employee is an unpleasant person and in my book three run ins is more than enough. The kind part of my soul thinks a little education is needed. I am not the guy to do this nor should I be forced into that position.

As I wrote earlier today, the dichotomy between the good cripple and the bad cripple can switch on a dime. What is never possible is the ordinary. I am a middle aged white man, an ordinary man, who just wanted to have a hot dog and a coke in the middle of the afternoon. Instead, I become the flag bearer for the bad cripple. I can live with this. Young cripples, fear not. Go ahead and be bad. Tomorrow I will be badder than bad. I am going to put my bad cripple hat on and talk to the owner. No one comes between me and my sausage.

Letter #5 Bad Versus Good: Embrace Bad

Be bad. I am bad. I have been a bad man for a while. I identify as the Bad Cripple. It is a moniker I am proud of. Being bad is not easy. Being bad makes me decidedly unpopular. Being bad has hurt my academic career. Being bad is the only way I know how to live. Is is who I am. Social injustice bothers me. The stigma associated with disability has derailed countless lives. We remain largely unemployed and poor. As a group, we are not well educated. Accessing mass transportation and accessible housing is a serious struggle. A case in point the NYC subway system. On housing--it took me two years to find an accessible apartment in Syracuse. Typical others take a few days to find a place to live. I call that social injustice.

Today I was struck by the following observation on vulnerability and disability. Link:

The world doesn’t like disabled people or our bodies to be vulnerable. We prefer them inspiring, brave, tenacious, or at least trying really hard. If you wonder why that matters, let me remind you that not even two weeks ago, nineteen people were murdered at the Tsukui Yamayuri-en residential center in Sagamihara for the crime of being too disabled. Their attacker hoped to create “a world where people with multiple disabilities who have extreme difficulty living at home or being active in society can be euthanized with the consent of their guardians.” He didn’t even try to back away from those words.
You’re either Good Disabled and don’t need anything, or Bad Disabled and need too much. If someone decides your body is too needy or behaves in ways they’d rather not contend with, they can also decide to hurt or even kill you. (That’s a reality the queer community likewise knows too well.) So admitting vulnerability can feel like inviting any response from ridicule to danger, with no idea which one you’ll get.
Its okay to acknowledge you are vulnerable. Being vulnerable does not mean one is weak. Our vulnerability is simply obvious. I am a wheelchair user. I am an easy target for the police or criminals.  When I am targeted for abuse it is called ableism. Typical others hate this word. I have started to use it far more often. Like the word cripple, ableism stops people. They wonder why would I identify as a cripple and what the hell does ableism mean? Cripple and ableism are old and new words. Like many other wheelchair users, we have reclaimed the word cripple from the bad old days. And believe me my young crippled peers the old days were very bad. Think ugly laws. Think forced institutionalization. Better yet read Alison Carey's On the Margins of Citizenship about intellectual disability and civil rights. 
Typical others like to put us in box. That box does not include a complaint department. We can't be too needy. Ideally we should be physically independent. If we fail to reach this threshold watch out.  You may be deemed too needy and hence too costly. Your life will have less value and be subject too a spirited debate about whether your life has any value. If you think I am being hysterical I suggest you read the work of Peter Singer or Dominick Wilkinson who wrote Death or Disability?
If typical others are delighted to see your crippled form you are doing something wrong. Worse, if you are deemed inspiring you are doing something tragically wrong. Your mere presence should upset others. Like it or not bipeds fear wheelchair users. The mother in the the grocery store that has a child and pulls the child away in fear and says "watch out for the wheelchair" is proof positive you are a threat. The fear bipeds feel is primal. Make them uncomfortable in any way possible. Use humor or anger or any other emotion and be subversive at all times. Work the system. Undermine authority. Derail institutionalized ableism. 
None of what I am saying will make you popular. You may hear an audible groan when you enter a room. That groan means you are doing a good job advocating for your rights and others. Remember it is never about just you. Typical others will accuse you of narcissism. This too is a good sign. It is never all about you. It is about making life easier for the guy that follows you.  So get out there and fight. Piss people off. Undermine authority. Believe in yourself and our cause. Our cause is a big one. Protect the civil rights of the most vulnerable among us.