We Do Not Die in a Social Vacuum

Death is an inevitable biological process every human will experience in one form or another. For most who live a typical life span, death involves a long and steady decline. Most Americans state a strong desire to die at home. Few people experience this sort of death. Only 63% of people die at home. Another 17% die in an institutional setting such as a nursing home. Far too many receive hospice or palliative care far too late. Link: http://www.apa.org/pi/aids/programs/eol/end-of-life-factsheet.aspx Most Americans do not die well. This is an indictment on American society. We hide death and divorce ourself of witnessing the process. We Americans do not even want to talk about death. On the rare occasion we do talk about death it is heavy on raw emotion and light on reason. Death, as discussed in the mainstream news, reflects the fever pitch in which we think about death. Brittany Maynard's death was tragic. She set herself up to be the personification of tragedy and her mission was to vigorously advocate for assisted suicide legislation. Maynard is not unusual, others have asked the court or physicians to end their life. In 1990 Larry MacAfee, a vent dependent quadriplegic, who was not terminally ill asked a Georgia court to allow him to turn off his vent. In 2010 Dan Crews expressed a desire to die in large part because he feared living in a nursing home. In 2011 Christina Symanski starved herself to death. McAfee, Crews, and Symanski were all high level quadriplegics. Aside from being quadriplegics they all shared one thing in common: when they expressed a public desire to die they became media celebrities just like Maynard. The general public loves suffering martyrs. 

I shake my head with wonder when I read stories about people with and without a disability who express a desire to die. Those that want to die get complete and total support in their quest. Ironically, who is discriminated against? People who are terminally ill, elderly, and disabled who want to live. Off to the nursing home for Grandma. Need specialized treatment for an aggressive and fatal form of cancer that will extend your life? Sorry, but that is not covered by insurance. What if you are paralyzed and need a social network of support to live your life? Sorry but institutional care is the best we have to offer. Disabled people, those terminally ill, and the elderly all put end of life issues in focus. The immediate reaction is fear. Foremost among our fears at the end of life is the loss of autonomy. The great value placed on autonomy works against us at the end of life. The same can be said for life with a disability. Autonomy is illusive for those with a disability. It defies conventional thinking. Autonomy is not about walking or the ability control one's bowels and bladder. Autonomy is a cultural ideal that defies definition. I consider myself to be autonomous. That is not how I am perceived by others--others who are bipedal with typical functioning bodies. My body represents the limits of modern medical care. My mere existence is a reminder of all that can go wrong in life. People with a terminal diagnosis  and the elderly make us equally uncomfortable. They represent human mortality. All know we will die and we do not need a reminder of this fact. Hence we segregate the elderly. We place the terminally ill in the care of others. Most of all we avoid talking about end of life. The discussions that are had about end of life focus on the unknown and autonomy. Most desire to die pain free. Most do not want to die cared for by strangers in an institution. People want to die in a humane way surrounded by loving family members. Predicting how this will happen is often pure folly. We humans are not good at predicting the future.

In terms of end of life, I am convinced of one thing: assisted suicide legislation is not the answer to why too many die poorly. Death is a social process. Death does not take place in a sociocultural vacuum. Even the most ordinary death has meaning to others who survive us. Those that lobby for assisted suicide legislation argue that it is about individual choice. People have the right to die as they choose assuming they are not mentally ill and are of sound mind.  Among those that advocate for assisted suicide legislation I am struck by the slogan: "My Life. My Choice. My Death". In the past I have quipped that sure is a lot of my, my, my. What is lost among the my, my, my is the social consequences of death. I read an essay in the Washington Post titled ""The Dangerous Contagious Effect of Assisted Suicide Laws" by Aaron Kheriaty about the rise in suicide rates in states that pass assisted suicide legislation. Link: https://www.washingtonpost.com/opinions/the-dangerously-contagious-effect-of-assisted-suicide-laws/2015/11/20/6e53b7c0-83fb-11e5-a7ca-6ab6ec20f839_story.html Kheriaty's article is largely based on the recent findings made by two British scholars, David Jones and David Patton. The Jones Patton article, "Effect of Physician-Assisted Suicide on Suicide Rates" in the Southwest Medical Journal, concluded that in states that had passed assisted suicide legislation the overall rate of suicide increased 6.3 percent. Link: http://www.medscape.com/viewarticle/852658 This conclusion led Kheriaty to write: 

It is widely acknowledged that the law is a teacher: Laws shape the ethos of a cultural by affecting cultural attitudes toward certain behaviors and influencing norms. Laws permitting physician-assisted suicide send a message that, under especially difficult circumstances, some lives are not worth living--and that suicide is a reasonable or appropriate way out. This is a message that will be heard not just by those with a terminal illness but also by anyone tempted to think he or she cannot go on any longer.

In part this explains why strangers will accost me with such statements such as "I would rather be dead than use a wheelchair". To them, life with a disability is a fate worse than death. Suicide for them is the only real option. What is not addressed is the fact that suicide is a public health care crisis. Suicide is the tenth leading cause of death in the United States. In 2013, the most recent year stats are available, there were 41,149 suicides. To me, the Jones/Patten findings and unacceptably high rate of suicide undermine the argument that assisted suicide is about nothing more than personal choice. Like  Kheriatry, I think we are at a cross roads. I too wonder what sort of society are we? Do we as a nation want to legalize a practice that will worsen an existing public health care crisis? 

 

 Let me contrast the above questions with a lesson from the past. 1951 and 1953 witnessed the most severe poliomyelitis pandemics in American history. Everyone knew those saved in the United States would never return to normalcy. This was a given. Rehabilitation units were established nationwide. School gymnasiums were turned into wards for those dependent on an iron lung. The response was extraordinary. Tom Koch in his book Thieves of Virtue wrote:

Nobody asked the cost of the new technologies that permitted patient survival. No one warned that the continuing care and rehabilitation for those left with withered limbs would be economically unsustainable. No body suggested that the folk saved by these extraordinary interventions would be a social burden whose public cost of care could never be recovered. Nor did anyone whisper that the long-term severity  of even the best anticipated outcomes would leave the afflicted with a quality of life so intolerable that they would be better off dead. Medical and social ethics demanded society and its physicians do all that was possible to save and, after saving, to rehabilitate polio's fragile survivors. Cost was not an issue because to not spend the monies, to not save the poliomyelitis patient, was unthinkable. 

I find the thought of assisted suicide legislation equally unthinkable. In place of the millions of dollars spent advocating for assisted suicide legislation we could use those funds to engage in a nationwide discussion about end of life. Why are there so few social supports for those who are elderly, disabled and terminally ill? Why are the elderly shunted off to nursing homes?  These are the sort of questions that could frame a nuanced and necessary discussion of end of life.  Don't be mislead by the highly emotional nationally known figures used to promote so called death with dignity laws. Dignity exists for all humans and it is our responsibility to value all lives. 

You Can't do That

Today was gorgeous. It was 71 f. with crystal clear blue skies. This is way out of the norm for central New York in November. Inspired by the weather, I went for a long walk with my lab Kate. I needed to get out and do something that would bring me some happiness and walking Kate has a 100% success rate. Yesterday in my class I showed a grim documentary about Willowbrook Institution. The only way to teach this topic is to get upset. I had to be outraged to be effective. I thought about what I would say to students while I looked at photo after photo of what Robert F. Kennedy called a "snake pit". Deeming Willowbrook a "snake pit" was being kind. It was a hell hole and a national disgrace. Few of the students had heard of Willowbrook. Few knew the long history of institutions; none had any idea ugly laws existed. The students were aghast. So was I.

Back to today. Post walk, I went to Wegmans, a supermarket chain in the Northeast, that has a cult like following.

Above is a sign Duke students created when they played Syracuse (the rivalry between the schools is intense and is big time NCAA sports). I thought the sign, "Wegmans is over rated" was funny. I will confess I love the supermarket chain and decided to pick up something special and cook outside. All was well until I went to my car after shopping. I was a trying not to drop to my grocery bag when out of the corner of my eye I saw a car slowly backing out. I instantly knew the car was going to hit me. It was a silent Prius and I instantly thought of Steve Kuusisto. Silent cars are potential killers, a very real threat to blind people. My next thought was to stick out my hand, put it on the rear bumper and push really hard. I dropped my bag as I propelled myself backwards out of harms way. I was not in any real danger and thankful the elderly woman driving the car was going very slow. The driver realized she had almost hit me and stopped the car. She got out of her car and was clearly annoyed. Her first words out were "You can't be out by yourself. Where is your care taker?" I took a deep breathe and told myself the woman is elderly and her perception of people with a disability is antiquated. I replied "I am ok. I am going to pick up my groceries." She sort of huffed at me and said nothing as I picked up my groceries. Once I had my things together she had regained her composure and firmly stated "You shouldn't be allowed out by your self." I told myself to keep my mouth shut. Let it go. Cut the woman some slack. She's old, she was embarrassed, and there is nothing to be gained by engaging her. Society has progressed I thought. Only an elderly person would state something like this. Perhaps she lives in a nursing home and knows some residents are not allowed outside the grounds without another person. Let it go.

Inventing things to do so I could enjoy being outside before I got in my car I decided to open the hood and pull the leaves out of the area between the hood and windshield. As I was doing this I saw a woman about to pull into the empty spot and we looked at each other.  I pushed to the front of my car and the woman continued into the spot. I was relieved. Normalcy won the day I thought. I was an ordinary person after all. One little old lady does not represent the way all people perceive me. Better yet the woman had a small child in the car kindergarden age. I give the mom and child a broad smile. I said "Hi I'm Bill what is your name?" She replies "I am Elsa. What are you doing?" I replied "I am taking the leaves out of the car." Her mind was whirring. She was curious, thought a second and said "You can't". Puzzled, I told her "Yes, I can. It is easy and fun to take the leaves out". Then she said "No you can't. You can't do a lot of stuff."  Her next words took me aback. "You can't walk. You can't do anything. You can't even have fun". At this point I looked at the mother and her face was neutral. I told the small girl "Have fun shopping with your Mom".

It is seemingly inconsequential exchanges such as the one I just described that keep me up at night. This girl had absorbed some lessons about people who use a wheelchair. Those that use a wheelchair simply can't do a lot of stuff. Did she learn this at school? At home? She was very clear on can't. I can't do a lot of stuff. Her mother did not correct her. Did she too share the belief I can't do a lot of stuff? When will this change? When will people consider disability, in my case wheelchair use, simply a part of life? Instead, the norm is to think of all the things I can't do. At the forefront is the physical deficit. Obviously I can't walk and the next thought is what else can't I do. Disability is bad, a negative influence on life that limits me. Why can't people make an intuitive leap in logic. Here is a middle aged guy doing the ordinary. Shopping, cleaning leaves out of the hood of his car. Ho hum. Instead the unrelenting focus is can't. The girl has learned her lessons well.

The above is a simple social exchange but it has larger implications. The instant negativity attached to disability is raised to a higher level when serious, life threatening illness is at issue. Cancer is bad. All illness is bad. Terminal illness is the worst--a tragedy. Terminal illness is the worst because our very existence is threatened. For some, the response to mortality is primal fear. Fear I get. I have felt primal fear and have had life threatening illnesses. I have almost died more than once. Primal fear however can be overcome with reason. This is hard to do. It is far too easy to let fear grip us. It is easy to think of all the things you can't or will not be able to do when end of life approaches. For example, Brittany Maynard was gripped by fear after she received a terminal diagnosis in the form of an aggressive and fatal brain cancer. Maynard chose to let her fear (understandable for sure) dictate her death. Indeed, her lasting legacy is less about her life than it is about her death or her "gentle passing" in the words of her widower husband Dan Diaz. As most know, Maynard became the focus of an intense and superbly orchestrated public relations campaign waged by Compassion and Choices. There is no doubt Maynard became the poster child for so called Death with Dignity legislation. Thanks in large part to her activism assisted suicide is legal in California.

The end of life, like disability, discussions are emotionally charged and focus on one thing: loss, or in the words of the little girl I met today, can't. There is nothing positive about the end of life. There is nothing positive about disability--you simply can't do anything. Both end of life and disability are about the loss of control. The loss of dignity. The loss of autonomy. End of life and disability are life altering for all involved. Maynard husband stopped working after two decades and is now an advocate for Compassion and Choices; a radical shift he maintains honors her life. I find this sad. Maynard is largely known for one thing--her death. I for one prefer to think of death as a process we all will navigate. That process should be about life, a celebration of what a person valued. Life does not end with a terminal diagnosis just as life does not end when one acquires a severe disability. I never think about what I can't do. I don't think my life is tragic. I don't wish I was dead--something strangers ask me. My focus is squarely on life. Maynard's focus was squarely on death. If I fear anything, it is people like Maynard. People who can't handle the process of death and instead focus on a "gentle passing". Oh the euphemisms abound when when death with dignity is discussed. Lost in the shuffle are people not as privileged as Maynard. Vulnerable people abound. Vulnerable populations are at risk. People with a disability are at risk. I am at risk. Read my essay in the Hastings Center Report entitled "Comfort Care as Denial of Personhood" published in 2012. I wrote about being offered assisted suicide an experience that haunts me to this day. For a person who is vulnerable such as myself I have good reason to fear for my life--a fact Compassion and Choices and those who support assisted suicide dismiss without much, if any, consideration.  

We face a great challenge in that society refuses to provide the necessary social supports that would empower us to live rich, full, and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly “patientcentered”— buzzwords I often heard in the hospital. It made me wonder, how do physicians perceive “patient-centered” care? Is it possible that patient-centered health care would allow, justify, and encourage paralyzed people to die? Is patientcentered care a euphemism that makes people in the health care system feel better? When hospitalized, not once did I feel well cared for. All I felt was fear, for when it comes to disability, fear is a major variable. I fear the total institutions Erving Goffman wrote about—places where a group of people are cut off from the wider community for extended periods of time, and every aspect of their lives is controlled by administrators (nursing homes, prisons, hospitals, rehabilitation centers). I do not fear further disability, pain, or even death itself. I fear strangers—the highly educated men and women who populate institutions nationwide.
What I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bodies. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word or am examined by a physician, it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it. 

I suggest one can replace the word disability used in the above quote with the word terminal. Euphemisms are dangerous. For example, legislation that enables one to access a lethal prescription is called Death With Dignity or Physician Aide in Dying. If we are going to let people legally commit suicide let's not mince words. It is assisted suicide legislation we are discussing. It is knowingly ending the life of a human being. I plan on living in my atypical body as long as possible. I like my body very much. I do not care about my body's obvious and disruptive dysfunction. I do not care about the pain I feel. I do not care about the spasms that wrack my body. Think Dylan Thomas Do not go gentle into that good night. A great poem for sure but for my taste think Pablo Neruda Only Death.   

There are cemeteries that are lonely,
graves full of bones that do not make a sound,
the heart moving through a tunnel,
in it darkness, darkness, darkness,
like a shipwreck we die going into ourselves,
as though we were drowning inside our hearts,
as though we lived falling out of the skin into the soul.

Crawling off a Plane

By now most people will have heard about D'Arcee Neal, who after a flight from San Francisco to Washington DC, decided to crawl off a plane after an extensive delay. Link to typical news story: http://www.cnn.com/2015/10/25/us/united-airlines-disabled-man/ Like any other person, D'Arcee Neal needed to use a bathroom after a long flight, hence his decision to crawl off the plane. For those who do not use a wheelchair, when a person such myself or D'Arcee Neal, fly the industry standard is simple. You are the very first person on the plane and the very last person off the plane. When I state you are the last person off the plane that means every single passenger has deplaned. The slow elderly lady, the family with four very young children, the sleeping man all the way in the back, the couple who are angry with each other with no interest in exiting. The only good thing I can say about the boarding process is that finding my luggage is easy. By the time I try to retrieve my bag all other passengers have long since departed the airport bags in hand. The rule of thumb I use is if every single thing goes as planned I will lose "only" an hour of my time. When I fly things rarely go right. In fact the norm is for things to go badly.

When I read about D'Arcee Neal, I had one question: why is this a news story. I have crawled off many airplanes. Every paralyzed man and woman I have known who can transfer independently have also crawled off an airplane. This happened to me and others more than once or twice. Was I furious when put in the position of being forced to crawl off the plane? You bet I was. I wrote letters, emails, and filed a complaint with the Department of Justice. I am far from alone. The National Council on Disability filed a report directed to President Obama. It is an exhaustive report. Link: http://www.ncd.gov/rawmedia_repository/862358ac_bfec_4afc_8cac_9a02122e231d.pdf Sections of the report made me weep, curse out loud, and reinforced I am far from alone. There is a systemic pattern of abuse and refusal on part of the airline industry to comply with the law. Despite the fact the law is firmly on the side of people with a disability unfettered access to something as simply getting on and off an airplane has gotten far worse in the post 9/11 era.

I can imagine those who do not use a wheelchair rolling your eyes and thinking how bad can it be? The answer is worse than you can imagine. For example, Robyn Powell, an attorney for the National Council on Disability travels often. In 2014 United Airlines, US Airways, Jet Blue and Southwest to one degree or another broke her wheelchair. Every part of my wheelchair has been broken by airlines: brakes have been severed off, upholstery ripped, front wheels wrecked, tires have been flattened and rear wheels bent, spokes gone missing, and most impressive was a badly cracked frame. In December of last year noted George Washington professor David Mitchell's wheelchair was dropped by US Airways on the tarmac in Hawaii. Another professor, There Pickens of Bates College, had her scooter damaged by multiple airlines. Keep i mind you cannot easily repair a wheelchair. It is not as thought he wheelchair repair store is around the corner. Simply getting a part can take weeks. The only thing that separates these  men and women from others is the fact they had the social supports to push back. Mitchell waged an aggressive media campaign and the airline agree to provide a replacement. In the ensuing weeks, Mitchell had no choice but to use an uncomfortable temporary replacement. I admire his efforts. Yes, he advocated on his own behalf but hopefully empowered others to do the same.

The law is very clear the rights of people with a disability extend to when they travel. The Air Carrier Access Act is excellent legislation that is ignored and violated on a daily basis. Link: http://www.disabilitytravel.com/airlines/air_carrier_act.htm How else does one explain away the thousands and thousands of complaints made each and every year by wheelchair users. Remarkably, this represents progress. Before the law was passed I was often deemed a "flight safety risk" and denied boarding. The risk people with a disability who use a wheelchair take every time they travel is significant. The response on the part of the airlines when they break a wheelchair or force you to crawl off a plane is always the same. You get a formal apology and a voucher to travel of about $200 or a similar amount for wheelchair repair work. When my son was a child I flew to Salt Lake City with him and my wheelchair was lost for many hours. I refused to get off the plane until my wheelchair was found hours later. We missed our connecting flight. The end result was a $600 travel voucher. When I used the voucher an airline employee asked how had the airline screwed up. I told him and his reply was "that happens all the time. You were smart not to deplane."

If the problem people who use a wheelchair encounter are so rampant why is nothing done? No one cares. People are too afraid to offer any sort of dissent once you get through the humiliation ritual known as airport screening performed by the TSA. The airline industry at large has been and remains hostile to any person that uses a wheelchair. Surely the inequality is addressed by industry insiders. Yes, some object. The best example is WheelchairTravel.org. This website is a mixed bag at best. The website was founded by John Morris. It is a professional website and I assume Mr. Morris earns a living by traveling and is part of the travel industry. I have found very little useful information at WheelchairTravel.org and I perceive it as a site for industry insiders. If I have a  travel related question I prefer Scott Rains and his site the Rolling Rains Report. While far to quick to praise the travel industry when deeply annoyed Rains can be an insightful critic. He is simply to nice--a good character flaw.

Mr. Morris wrote "3 Takeaways from United Airlines' Disability Services Failure." Link: http://wheelchairtravel.org/3-takeaways-from-united-airlines-disability-services-failure/ What Mr. Morris wrote was a mixture of fantasy and reality. He concluded the lessons are as follows: 1. Wheelchair users should expect to wait. 2. Planning ahead is important. 3. United Airlines should be praised. I will respond to each point.

On waiting: Mr. Morris appears to blame and question if D'Arcee Neal was patient enough. Mr. Morris also appears to suggest waiting a long time acceptable. He blames the gate agent for the failure of outsourced personal to appear at the gate. A critical factor was the plane landed at night and was the only flight of the day for United Airlines to and from D'Arcee Neal's destination. Here we have an insider in the industry, an insider with a disability, who politely questions the veracity of D'Arcee Neal experience and paints him as either naive or inpatient. I have been in this situation many times. Land late at night and this often is accompanied by an extended wait. If all goes well, within 30 minutes assistance should arrive. Like D'Arcee Neal, I begin to get agitated after waiting 30 minutes. That is 30 minutes after the entire plane has been empty or essentially 45 minutes after the plane has landed. Depending upon the reaction of ground personnel I will wait at least another 15 minutes or longer for someone to appear. After an hour I deem the wait a lost cause and crawl off the plane.  After being assured for well over an hour that some one will appear shortly I become skeptical and take matters in my own hands. Once in a while airline personnel will share my frustration. In rare instances non trained personnel will help me off the plane. The point here is that most people who use a wheelchair and fly regularly know the system. At some point we give up and accept the fact no one is going to appear. I suspect D'Arcee Neal reached his tolerance limit. The only useful information provided by Mr. Morris is expect to wait at best 30 minutes but be prepared to wait longer.

On planning ahead: Planning ahead should help. It does not. Planning ahead is an utter waist of time. Mr. Morris is simply wrong. When one travels the major variable is luck of the draw. In a day of traveling I have one flight where the crew was great. The next flight on the same airline the crew was rude and nasty. Generally speaking, some airline personnel are great; most are not. A person that uses a wheelchair represents one thing for ground personnel: work. Most ground personnel are indifferent to my existence. Most resent my existence and audacity to travel alone. Mr Morris suggests that on long flights people with a disability that use a wheelchair should dehydrate their bodies. I have done this for decades. On long flights I dehydrate myself 24 hours in advance of travel. If I do this now at my age I feel sick for days. But wait! Mr. Morris enters into fantasy land when he writes:

Using the onboard lavatory is an option, even if you cannot walk. Prior to travel, passengers can request that an aisle chair be stowed onboard for use during the flight. Flight attendants have been trained to help passengers to the restroom using the onboard aisle chair. This aisle chair cannot be used for boarding or deplaning, and cabin crew are restricted from assisting in this regard. If the passengers’ disability would prevent him/her from using the aircraft’s lavatory in this manner, they should consider booking an itinerary with an intermediate stop/connecting flight.

I burst out laughing when I read this. I have been paralyzed for 35+ years. The above is never going to happen. Never. The idea that flight personnel would be willing to assist is wildly wrong. This would take time and energy. It could interfere with beverage and food service. Even the possibility such an issue might arise makes it impossible. The idea an aisle chair is going to put on an aircraft is unrealistic. The suggestion that the flight crew have been trained to assist a person such as myself is pure fantasy as well. I have seen flight crews refuse to help elderly people enter a bathroom. I have seen flight crews be point blank rude to mothers with an infant and a small child during toilet training who needed a bit of help. There is also no chance your wheelchair will be stored anywhere but the belly of the aircraft with the luggage even thought this violates the law if one uses a folding wheelchair.

On praising United Airlines response: This stunned me. Praise an airline for violating the law? Really? Mr. Morris wrote: 

One of the flight attendants witnessed a violation of the ACAA and reported it to corporate. They reached out to the passenger and offered a proactive apology and $300. According to the CNN report, United has also suspended the manager on duty. That is truly unprecedented, and a game-changer. United Airlines sent a message to its employees that failures in the provision of services for disabled travelers will not be tolerated.

United did not respond in a typical way. Offering $300 immediately is $100 more than usual. Suspending the manager on duty is called finding a scape goat. The gate agent did his job exactly as required. It was not his fault the out sourced employees did not show up.  The suspension is not unprecedented. It was corporate self protection. Better to fire one person than be subject to an investigation by the Department of Justice.  The spin here is remarkable. 

In short, Mr. Morris gives an industry response. I am sure the nuts and bolts of what took place will be debated intensely among those interested in the experience of those that use a wheelchair and fly. This is what I learned: Mr. Morris praised United Airlines for paying off a passenger with $300 whose civil rights were violated.  Mr. Morris suggests people who use a wheelchair and fly keep their mouths shut and wait for an aisle chair to arrive. Mr. Morris implies D'Arcee Neal was impatient. Mr Morris thinks becoming dehydrated is a good idea. Mr. Morris thinks flight crews will store an aisle chair on board and are trained to help you into the restroom. Mr Morris thinks planning ahead will help. Mr. Morris is very wrong on all these points. 

Let me give those that use a wheelchair some practical advice. This coming from a man who advocates for others with a disability and has no ties to the travel industry. This advice is based on the gritty reality that the disabled person who is traveling is doing so with a severely limited budget given the unemployment rate among Americans with a disability is about 70% Expect problems to arise every time you fly. Expect airline personnel to be unhelpful. Expect to be demeaned by either airline personnel or flight crews. Expect a battle each and every time you fly. Be grateful when things go as planned. At a practical level I suggest the following:

Fight for the bulk head seat. You will have fought for a tiny amount of extra space but being in the first seat will enable to see or hear problems as they arise.

If you cannot get a bulk head seat, sit as far forward as possible. The less time spent in aisle chair the better. 

Those charged with physically helping you on and off the plane know little and sometimes have had no training. Many will not speak any English and are poorly trained and poorly paid (think sub minimum wage). Be assertive in the way you want to transfer.

Try not to take a flight during the morning or evening rush hours.

Try not to take a flight that lands late at night. Airports can be desolate places.

If making a connecting flight reserve at minimum two hours between flights. I never leave less than three hours. 

Carry a copy of the Air Carrier Access Act. A good app is available as are brochures in the airport. 

Be assertive. Be willing to say no and ask for the terminal resolution officer. Such a request can be used to assert your power when airline personnel are uncooperative.

Remove anything that might become detached from your wheelchair.

A well used wheelchair helps. Think duct tape. My wheelchair is rugged in the extreme but I have learned in recent years to make it look fragile. A piece of duct take here and there goes a long way if baggage handlers think it is on the verge of falling apart. 

Travel with a power chair at your own risk.  Given the weight and complexity of power chairs these modern marvels are at high risk for severe damage or complete destruction. 

One last point. If you think I have been too harsh on Mr. Morris I suggest you read his post about flying first class in which he wrote: In the event something goes wrong, greater attention might be paid to your needs if you are ticketed in a premium class of service. Link: http://wheelchairtravel.org/first-class-for-the-wheelchair-traveler-luxury-or-necessity/ This is an indication Mr. Morris has no idea of his privileged status. I suggest Mr. Morris spend more time flying on low profit domestic milk runs his crippled peers most likely experience.  

On Space and Discrimination

Space, the final frontier. This is not about the famous line from Star Trek but rather about how disabled bodies are devalued. Our built environment is designed for people who are bipedal. This is reinforced every time I leave my home. Last weekend it was a lack of space between tables at a local diner. This is the norm in most owner operated restaurants--tables are far too close together for any person who uses a wheelchair to easily navigate. I get it; restaurants need to jam as many tables and chairs so they can be profitable. To avoid narrow aisles and over crowding I eat at many national and mediocre big box restaurants.  The national restaurant chains are more likely to adhere to the ADA. It is far more likely that I can use an accessible bathroom. It is also more likely I can access multiple tables without asking diners to move because the aisles are wider. The lack of space is something I think about every single time I go out to eat and attempt to access a larger venue. Restaurants, school auditoriums, civic centers, professional sports stadiums, small town theaters, courts, office buildings, airports, bus terminals, small hotels, bed and breakfast, and museums all too often present architectural barriers.

I often wonder what do designers think when wheelchair access is required. The human element is certainly not considered. Instead, I think too many designers perceive wheelchair access as a waste of space. Simply put, access is a problem and by extension those who use a wheelchair are a problem.  I am not a problem. The constructed environment is the problem. Just today a fellow member of the Not Dead Yet board, Carrie Ann Lucas, was deemed a problem. She attended a Colorado University football game and at one point risked arrest. Many huge stadiums are wheelchair  accessible in name only. My favorite example is the University of Michigan's Big House. Prior to its renovation in 2007 had about 88 handicapped seats in a stadium that held over 100,000 people. The university did everything it could not to comply with ADA. This is a repetitive pattern that has not abated.  

Attending most large sporting events is problematic. This weekend Carrie was deemed a fire code violation. Carrie is not a fire hazard. Carrie is a human being. People with a disability are often told they are a fire hazard. The litany of lines used to exclude are plentiful: "I am sorry you can't enter the building", "You cannot sit in the aisle", "You cannot wait there". As a young man I was often told "You cannot board this plane because you are a flight safety risk". In NYC I have been told "You cannot enter this restaurant", "You cannot get on the bus the lift is broken", "You cannot enter the school because no one has the keys to the accessible entrance". I quickly learned you cannot was followed by rationalizations such as "we are concerned for your health and safety". I know I am screwed when my health and welfare is a biped's primary concern. The most officious were pilots in uniform, largely male, and state with 100% certainty: "You are a flight safety hazard". NYC bus drivers were mean; school teachers were the most narrow minded. Virtually none acknowledged the fact I was a human being. Countless bipedal people think they have power over a person with a disability. I have had ushers at Madison Square Garden tell me where to sit in handicapped seating. Some of MSG employees have threatened to evict me because I am not exactly in the indicated location (I am referring to inches). This is merely an assertion of power. It has nothing to do with access and is instead a humiliation ritual.

My point is when disability enters the question of space bipedal people don't get it. All they know is they have power and we people with a disability do not. Hence Carrie's being deemed a fire hazard is worn out ploy used to exclude.

The law states large venues must have dispersed seating but this is often ignored. The norm is for handicapped seating to be jammed in the least desirable location. I call this the disability ghetto in honor of Harriet Mcbride Johnson. In Carrie's case handicapped seating is only available in the end zone behind the marching band. I cannot think of a worse location to watch a football game. Space for people with a disability to observe an event is not valued. Oh, handicapped seating exists but is consistently located in the worst possible location.

This was my view when my son graduated from college.

Handicapped parking accompanied by objectionable and inappropriate statement.

Stadium handicapped seating area.

Obviously people with a disability travel in packs and have no bipedal friends. I suppose we cripples also like to conglomerate in one location. The forced segregation of handicapped seating at large venues was addressed by the ADA. Dispersed seating is the law of the land. Dispersed seating is rare in my experience. Rare in that someone put thought in the seating area and the experience of attending an event. How does one enter and depart the venue? Are all public areas accessible if the patron wanted to walk around the venue? Are there enough toilets and perhaps a so called family bathroom. Do food vendor locations have a lower counter? Does one enter via elevator or lift? If so is lift filled with mops, buckets and trash?

It is the absence of thought that is the real problem. As my son told me long ago, no one cares about access. He is correct. Our space and existence is not valued. The ADA is an inconvenience. It is an unfunded federal mandate. Oh my, I hear that one often when dealing with people in health care industry. At issue is quality of life. I think no one should consider sitting in the center of a theatre a "luxury" Americans enjoy. These words were penned by Dave Hingsburger, a Canadian, at Rolling Around in My Head". http://davehingsburger.blogspot.com/2015/10/being-seen.html His touching post made me think. Will I live to see the day when I can just go out. I am never able attend a public event without much thought. How can I get in? Will it be so crowded I will be miserable. How long will it take me to contact someone and purchase tickets? For example, I wanted to attend opening night for the Syracuse Crunch, the local AHL minor league hockey team. Unlike bipedal fans, I cannot order tickets on line. I must contact the box office that according to the website enables them to provide superior service. This supposedly superior service does not include returning three phone messages. Unable to contact the box office on four consecutive days I did not attend opening night. This passive discrimination is common. Like being deemed a fire hazard, the superior service is in fact a form of exclusion. In short, Carrie's experience hit a vein. I feel for here. I have been in her position many times and I know all too well that her memories of the game might be complicated by the knowledge her existence was a problem. Her life was not valued. She was supposed to enjoy a football game not be subject to social denigration.

Dissed at Dav's Diner: Maybe maybe not

Syracuse New York is a gritty place. This is not a critique. I like gritty cities. Syracuse is the epitome of grit. Poverty abounds, especially in south Syracuse. There have been twenty murders this year--most of them gang or drug related. The roads are a mess throughout the city. Local sports, all minor league teams of various quality, play in small and sometimes run down facilities. Homeless people wonder downtown streets in significant numbers. In spite of its grit, I like Syracuse. I have driven all over the city. The crumbling architecture reveals a city that has been in decline for decades. Once an important hub first for the Erie Canal and then the railway system Syracuse is an old. When I think old I think inaccessible. Wide swaths of Syracuse are a geographical nightmare for a wheelchair user. It is frigid and snowy in the winter--think central New York snow belt. Getting around the city is a real challenge. Most businesses remain inaccessible. Syracuse University where I work is hilly. Hilly as in it is preferable to go well out of your way to avoid the steepest hills. Foremost among the barriers is access to housing and substandard mass transportation in the form lousy bus service. If it were not for the university there is no way I would consider living in Syracuse. 

When I moved it did not take long to realize virtually all housing was grossly inaccessible. I would estimate less than 5% of housing is accessible. That 5% figure is generous. Old apartment buildings have steps. Old houses have steps and big old homes have been cut up like a pizza pie into inexpensive housing for students. My options were and remain severely limited.

The above is a long explanation of why I live about 17 miles east of Syracuse. I saw exactly one accessible rental unit. To describe my rental unit accessible is a big stretch. Regardless, I live in a picturesque town called Cazenovia. The little town is the archetype for small town USA. Located on the southern shores of Cazenovia Lake, the town was founded in 1793 by John Lincklaen. He constructed Lorenzo mansion, a gorgeous and largely inaccessible building, that is in mint condition. Cazenovia architecture has not changed much since it was established. The small town teems with history. Cazenovia also teems with steps. The residents of Cazenovia love their buildings. They love their buildings as they were a century ago. Change, architectural change, is met with overt and subtle animosity. Residents are very proud of the town and the historic buildings that line the main drag, Albany Street. Wheelchair access is severely limited. Indeed when I tell others with a disability where I live they look at me incredulously and ask "Why would you live there?" It is a good question.

There is no doubt Cazenovia is a lovely town. The town is impeccably well maintained. Tourists abound in the summer and Fall  and many stay at the local and inaccessible bed and breakfasts. Examples   

Town Park

Albany Street

Cazenovia is many things to its residents. It is without question a beloved town, a great place to raise a family. It is a wealthy little town. It is a very white place to live--97% of residents are white. The town is very conservative. The local newspaper is the Cazenovia Republican. There are several Churches in town. There are many what I would call heavy duty Christians active in every part of town life. Living in Cazenovia is like stepping back in time. In fiercely preserving its architectural heritage, one does not think or even consider wheelchair access as being a variable. Indeed, ramps are an eye sore that would mar the historic buildings--a statement I have heard many times. What I have absorbed in the last year is that outsiders have no say in town activities. When I moved in I naively thought I could lend my expertise to the town and make it more accessible in a way that residents would not object to. I called the town. I sent emails to people I thought would be required to deal with questions over access. The response was silence. The most common reply to email was I acknowledge your interest and concern and will get back to you. No one ever got back to me. I learned the subject matter is taboo. If I raise the issue of access the conversation ends abruptly. In the last year it has become apparent that residents and town officials think wheelchair access is a choice for them and them alone to make. My presence is an imposition. Certain parts of town are visibly accessible and the library is often signled out. I have heard repeatedly "the library has gone out of its way to be accessible. A lot of money was spent. They have electric doors for you". This is done out of the goodness of others hearts. The idea that civil rights and disability rights are one in the same would never cross the minds of town officials. People in the town of Cazenovia are steeped in the charity model of disability. One example should suffice. Each year the flower club or similar town entity decorates the village library entrance. They do a great job. The decorations are tastefully done. I am sure many parents cherish photos of their children out side the library entrance. The decorations also block any wheelchair user from pressing the electric door open button. While checking a book I noted this to a librarian. She had the look of a deer mesmerized by car headlights. Unsure how to reply she stated the entrance looked so good and she would hate to move the decorations because many people worked very hard. Perhaps she said "I could call before I arrive and someone could go outside and press the open the door button". The town has faux access. Little blue wheelchair logos abound in high visibility areas but practical access is absent. This is common. I have no doubt a dedicated group of residents really thought about access. I bet such a group met in person. Decisions were made. I also am sure not a single person making the decisions used a wheelchair or had intimate knowledge of disability. This is why the slogan "nothing about us without us" is used by disability rights activists. 

I am penning the above because of what I experienced this past weekend in town. I planned to meet a colleague at Dav's diner at noon on Sunday. Not an ideal time as the diner would likely be crowded. Dav's is a typical diner. The food is not bad and it is was a mutually convenient place to meet. I arrived first via the accessible side door. It was crowded but I see a few empty tables. I have been to Dav's a few times. The employees are reasonable people. It is inevitable that a chair will need to be moved away from a table where I will sit and people will need to move so I can get by. Move as in standing up and moving their chair out of the way. Getting to a table is problematic but this is the routine in many restaurants. What was not routine is that for about 5 minutes after I entered employees walked past me many times. After 5 minutes I was getting annoyed. I saw two other people being seated who arrived well after me. At some point it was painfully obvious I was waiting and being ignored to the point it was socially awkward. Finally a young worker came up to me and asked how many. I reply two and she tells me to wait. She walks over to the cash register area, a short conversation ensues between employees.This is odd. She returns and tells me "We just got a huge order. There is going to be a 30 minute wait". Who waits 30 minutes for diner food when it is 30 degrees outside? No one.Moreover there are two empty tables in my line of sight. There is no waiting line. No one except for me is waiting for a table. I had two choices. I can ask pointed questions. Why am I the only person waiting for a table? Where are the mysterious people with a huge order? Why is the wait time so long when tables are open and within sight?  Option two was to simply leave without being served. I left because I did not want to argue and considered my meeting of more importance than food. I left and met my colleague at a nearby McDonalds, had coffee and declined to eat bad processed food that would make me physically sick. 

Did Dav's dinner discriminate against me? You bet they did. The conversation between employees was short and sweet. They concluded it was too much work to remove a chair for me and force seated customers to move. They were busy and did not want to fall behind. They also wanted to be sure they did not lose tips because customers were inconvenienced. Believe me people initially move an inch so I can get by and when it dawns on them they need to stand up and really move they are not happy. Some people get very angry. In short, the worker lied about a "huge order" and created a 30 minute wait they knew no one would ever accept. Can I prove this? Not a chance. What I can state is that I have seen this tactic more than once in a restaurant. What bothers me is not what took place but rather I had no recourse. If I pushed, if accused of lying I would be easily slotted into the bitter cripple stereotype or have a cripple's disposition. I am mad at the world and want everyone to be as miserable as me. I could of course refuse to give them my business in the future. That is not much of a loss. What took place at Dav's was not unusual 30 years ago. I had no civil rights 30 years ago. My civil rights are protected today. What I experienced was a significant civil rights violation. Worse yet, I am sure the employees have no idea they broke the law. This is the very real and ugly side of living in a town that glories in its beauty and is firmly resistant to change. 

Time Drains Away

Many people without a disability are idly curious about me. How do I get in the car? How do I get dressed? Can I have sex? There is a long list of inappropriate and sometimes rude questions that are posed by strangers. Over the years I have gotten a sense when and when not to answer questions. In recent years I have returned questions with one of my own. Why are you asking me questions? Usually the stranger replies: I am curious. To this I respond I am not interested in your curiosity. The social interaction ends abruptly. I suppose some strangers think I am rude. Frankly, I do not care. I am willing to potentially engage because once in a while people have good reasons for asking me questions. For example, I was kayaking last summer and a guy asked what level of injury I had, how long had I been kayaking, and what sort of kayaks I preferred. I asked why he wanted to know and he told me his father had a spinal cord injury a year ago and had not as yet returned to kayaking. In the following days we exchanged email. I asked him to keep in touch and a few weeks later he told me about a great day he had with his father kayaking. He went to a location I had never been to that was accessible. We all benefited from the questions he asked me.

For the exceptionally naive stranger, I am asked about my health status. More than one person has asked if i am terminally ill. When I reply that I am healthy and that my biggest problems are social and time related people look perplexed. No drama. No suffering. An ordinary life? Can't be. Of course there are specific and sometimes severe secondary conditions associated with paralysis. I manage such complications well. I have had one wound in 2010 that involved a nearly year long recovery. I have fairly typical urological issues that I will not bore you with. I experience pain in my hips--the lasting legacy of my wound in 2010. I can't really complain about the way my body functions. Frankly, I do not think about my bodily functions. My thoughts are akin to an unimportant app on my cell phone. The app is always running, drains little battery life, and is ever present. What I do think a lot about is time. Performing my ADLs to use physical therapy talk is a significant drain on my time. The ordinary is time consuming. I lose many hours a day doing the most simple tasks.

Consider today. I wake up and get out out of bed. Transfer one. I do my usual morning stuff. Use the toilet. Transfer two. I get dressed. Transfer three. I get in my car. Transfer 4. I get gas and put air in my tires. Transfer 5. I get pizza for lunch. Transfer 6. I go to the bank. Transfer 7. No one answers my messages about handicapped seating where the local AHL team plays. I go to the arena box office. Transfer 8. I drive home. Transfer 9. All these transfers take time. Finding parking spots takes time. Finding an accessible bathroom also takes time. Waiting for the bipedal person magnetically drawn to the one accessible stall I can get into takes a great deal of my time. Lots of needless waiting is my norm. Weird and skewed social interaction are also my norm. Even more time is lost when something goes wrong. Two weeks ago I drove a close friend to a doctors visit. It was a long drive. I knew at some point I would need to fill the gas tank. I noted my tires needed air. My friend pumped the gas and put air in my tires (a giant luxury). This is when things went askew. The fill valve on the tire cracked.  Air gushed out the wheel and went flat. Great. We call triple AAA. We wait. Guy shows up. I get out of car. My dog kate must get out of the back of the car so the AAA guy can find the donut. He puts the donut on the car. Kate jumps into the back of the car. I transfer into car. We drive 4 miles to the nearest repair shop. Kate gets out of the car. I transfer to my wheelchair. The guy at the shop is very nice and quickly repairs the tire. Many criticisms are leveled at the shoddy tire valve on my fancy car. We agree VW deserves everything that will unfold in the coming year for cheating on diesel car emissions. Donut is secured and put away in its cubby. Kate jumps in the back. I transfer into the car. We lose at least one hour with tire repair. And here is the kicker we were lucky. Actually, I was lucky. The flat took place at a fuel stop off the interstate. The AAA guy was nearby. The garage that put a new valve on the tire was swift, exceeding polite and asked for just $15. What if I was alone and broke down on a side road? I choose to not think about this. Instead I am vigilant in terms of keeping my car well maintained. All inspections and maintenance are up to date. At the end of the day my hip was on fire. If I transfer more than 6 times a day my hip will hurt. It might hurt for five minutes or five days.

Disability: the time sucker of all time suckers. Nothing is routine. Nothing is easy in a world that is designed and constructed for the hordes of bipeds that roam the earth. I never cease to be amazed at the ignorance of others. This bothers me. How can people be so oblivious 25 years post ADA? Why do some people freak out when I appear? Why is my existence always seem to be a problem? Over the weekend I went to a small town diner. The person serving me was extremely nervous. She stood  oddly far from the table as she took my order. Her hands were shaky. She spoke very slowly and deliberately. She spoke so loud one or two people turned to stare. Then she dropped the bomb. She asked me in the slowest way possible: will.... you.... need... help...assistance....to eat...you know... you know...to eat your food. I can cut up what you order. I can feed you. I took a deep breathe. I told myself not to lose my temper. I tell myself she thinks she is being kind. Getting angry will not help. She has likely lived in Central New York her entire life. She is old. She should not even be working at her age. She should be enjoying life. I put a fake smile on my face and say no thank you. I enjoy my meal despite dealing with ignorance and being unintentionally demeaned. As I leave I see the woman in question and her parting words to me are killer. It is so nice to see you out.  Hopeless. The world is hopeless. Bipeds don't get it and most do not want to get it. I wish in retrospect I got angry. I do not mean I wish I raised my voice in ager (I never do that). I wish I had asserted my independence. I told this to a friend who told me I was in a lose lose situation. He joked if you told her you were a professor at Syracuse she would have patted you on the head and said good boy or gush I was an inspiration.

Finally, for those that think I am too harsh below is for your viewing pleasure. Each and every question and multiple variations I have heard over the years.

But it had a Cost

It has been an unusually long time since I wrote here at Bad Cripple. In August I was enthused about the Fall semester but depressed. I retain my enthusiasm and ditched my depression in large part because my honors class is as usual filled with excellent students. I am somewhat taken aback the calendar has turned to October. Before I know it I will be grading papers--a job I enjoy in large part due to the fact my students know how to write well. More personally, I have been out of sorts for two months. August is always rough for me physically. I wither in the heat. By late August I am worn down. This September seems like it was hot as August and two months of heat has left me out of sorts. Beyond work, I have not been able to focus on anything. I have many excuses: I am worried about my mother's health. All week I have been thinking about my brother Jim. He died in April and today was a football day. I am a New York Jets fan and the team played in London. With the time zone change the game started at 9:30AM. I had the game on the radio as I cleaned up my house and I recalled Marty Glickman. Now that man had an interesting voice and an even more interesting life. This in turn made me think of my brother Jim and my father. My brother Jim loved the Giants and tailgating. The man was a master at making sandwich. In his honor I made a great sandwich for lunch. As for my father, every Fall we would go to late mass, then see my grandmother, and drive to watch the Giants play at Yankee Stadium. We watched the 3rd quarter only and listened to the rest of the game on the radio. Ate the game, my father had a beer and I had a coke. We each ate one hot dog. My father smoked a cigar. Oh, how manly I felt. Surrounded by other men we cheered on the Giants. I did not really care about the game, it was the experience. Life was good. It still is.

It is a gorgeous Fall day. I have no right to complain about my lot in life.  I live in a little town in Central New York and am currently looking out at a magnificent view of a lake. My rent was paid on time. My beloved labrador Kate is at my side. I have really good food in my fridge. My car is in good working order. Physically I feel fine though I am not thrilled with the aging process and being a middle aged man. Am I going to complain? You bet I am for my life and current position have come at a cost. Given the opportunity, I would without question not change my life in academia. My father was proud of me and urged me to do something important. Do not worry about money he told tell me repeatedly. Do something important. For him and me, important meant become an academic.  When I question life and career choices I close my eyes and think of the day I got my PhD at Columbia. My father and mother were very happy. Arnold Gold and his wife Sandra were there and happy like my parents.  I was married and my son was an infant. It was a great day and remains a cherished memory.

As I sat in the sun and ate my lunch I read two stories that deeply touched me. It reinforced how lucky I am and makes me wonder about my future. Last week the Seattle Times published a story about the life and death of David Heller. Heller lived in Seattle and for many years worked as an adjunct. Adjunct work is hard. Adjunct work pays poorly; Heller, at age 61, earned $18,000 a year, well below the poverty line. He had no job security. He was hired by the semester. He had no benefits. There are perks to being an adjunct. The administration has no interest nor commitment to an adjunct. We get to pick and chose the degree we want to be active on campus. We are cheap day laborers and just as invisible. We come and go and many teach at multiple universities at the same time. In the Puget Sound area, adjuncts are referred as "I-5 flyers". This is how 70% of professors nationally earn a living. In the Seattle Times a friend of Heller's, Charlie Fischer stated:

Heller was a symptom of the commodification of education. It’s increasingly about measurable outcomes or monetary results. Because an engineering degree has so much more economic value than one in say, literature, the former is supported while the latter is slowly devalued.“Dave was like an itinerant philosopher,” Fischer says. “There’s almost no role anymore for people like him.In his story, Fischer quoted a UW philosophy professor saying Heller was so dedicated “He would have lived in a barrel, if necessary, to devote himself to teaching.” That’s a great tribute to the man, but an indictment of the system that it almost came to that. Link: http://www.seattletimes.com/seattle-news/gifted-teachers-life-of-the-mind-was-also-life-of-near-destitution/?utm_source=facebook&utm_medium=social&utm_campaign=article_left

At the time of Heller's death he lived in a tenant group house in Seattle's U District. He had a worn out bed, a fridge and a massive library of books crammed into a small space. I get this. I live Heller's life as do 70% of all professors. For most of my career, I have been underemployed and on the periphery of academia. I have been treated badly. I have been treated well. I have no idea what will happen from one semester to the next. I hate the summer because I am not paid. I can no longer teach during the summer--the physical grind is too taxing. If you factor in the prep work required to teach, I earn about $10 to $15 an hour. Some ask, why don't adjuncts object? Some do. In February 2015 National Adjunct Walkout Day was held. I did not walkout. I do what I always do--held my class, slapped a smile on my face, and did my job. I know what others have figured out but for complex reasons refuse to admit. If all adjuncts quit tomorrow the American collegiate system would literally fall apart. There is too much money involved for that to ever happen. College is a cash cow.

My future is unknown. I will hang on here at Syracuse for as long as possible. I have nothing to tie me down. I launched my son into the real world. I live alone in a small apartment. I have a borrowed desk. I have a bed and a drum table. I have one folding chair. I have a lot of books. It is a good life I lead. A solitary life.  I wish I could share it with my brother and father. Instead, I try to remind myself of the good times we had. As I noted, I am out of sorts.