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Sunday, April 5, 2015

Easter, Death and my Brother James Peace

My brother James Peace died this week. My shoulders hurt. My eyes are sore. My heart broken. The mourning has begun and must run its course. I have tried to write something and quickly stop as my eyes floor with tears. Today is no different. I have written and spoken a lot about how great my parents were when I was a sick kid. I have also written a lot about the care I received as a kid. What I have not been so open about for reasons I cannot decipher is how my brother too cared for me. He had an innate ability to know what I wanted. Silence, a long middle of the night discussion on the meaning of life or cut rough shod over my living conditions. What he did the most though was be a humane presence. He showed up to see me at 8AM, noon, 2AM, 1PM--I typically had no idea when he would show up or how long he would stay. He knew what to bring. News papers, flowers, or a beer. What I knew and what I always looked forward to was his smile. A giant shit eating grin was often on his face. In the summer he often wore a baseball cap. This is the brother I loved. He was a good man and will be missed more than he imagined.

Sunday, March 15, 2015

Diane Rehm and the New York Times are a Problem

On March 14 the New York Times editorial board published "Offering a Choice to the Terminally Ill". Link: As expected, the NYT editorial board is in favor of assisted suicide legislation and staunchly supports Diane Rehm and the advocacy group Compassion and Choices (once known as the Hemlock Society). The NYT editorial is boiler plate pro assisted suicide rhetoric. The editorial could have been written by any news agency and this is not just disappointing but indicative of the way Compassion and Choices has dominated the discourse associated with the end of life. Two things struck me reading the NYT editorial. First, the adoption of Compassion and Choices phrases. The NYT did not refer to assisted suicide legislation but rather "so-called aid in dying bills". Such proposed legislation was described as "a humane option". Moreover, the NYT argues law makers should consider "how successfully and responsibly the law has been carried out in Oregon". Ignored was the experience of Randy Stoup and many others. Stoup was an uninsured Oregon resident unable to pay for chemotherapy. The Oregon state health plan would not cover chemotherapy but would pay the cost of physician assisted suicide. Second, and most problematic, is the NYT adoption of Compassion and Choices rhetoric. In an effort to undermine opponents of assisted suicide as being cold and uncaring the NYT noted Rehm's terminally ill husband "only option for ending the suffering was to stop eating and drinking. Physicians in most states, including Maryland, where he lived, are barred from helping terminally ill patients who want to die in a dignified way". The key here is how does one define "dignified". And more to the point, a patient, any patient in fact, can accept or refuse treatment. If one wants to die with "dignity" however it is perceived a patient can already do that by directing their own health care. I suggest all people read various forms of the Patient Bill of Rights. People have the right to fair medical treatment and the guarantee of autonomy over their health care. The NYT emotional ploy that "Health care providers in states where assisted suicide is illegal face wrenching choices when dying patients ask them for help" is grossly misleading. Health care providers are specifically tasked to respect and follow the autonomous decisions patients make. Those choices include tacitly hastening the end of life if a person chooses. A person with cancer can choose to not receive life extending chemotherapy for instance. A person can choose to not receive life sustaining anti-biotics. Examples abound when one factors in serious illness, disability and advanced age.

What bothered me the most about the NYT editorial was whole sale acceptance of a Compassion and Choices framework about the end of life that defies logic and distorts the politics associated with assisted suicide legislation. According to the NYT, "Ms. Rehms said she and her husband had long ago agreed they would help each other die if either was in growing distress from a terminal illness. Her inability to help him die humanely is a situation no spouse should have to face". I am stunned the NYT would stoop this low and be so obviously manipulative. What is over looked is Diane Rehm's long standing support for assisted suicide and association with Compassion and Choices. To suggest that Diane Rehm is a paragon of virtue and neutral observer is wildly wrong. Rehm is the public voice of NPR, her radio show is nationally broadcast, she has an estimated 2.6 million listeners and is closely associated with Compassion and Choices that advocates for VSED (voluntary suspension of eating and drinking), the method of death for her husband. Rehm has also been subject of criticism from the NPR's ombudsman who pointed out Rehm has been attending fund raising dinners for Compassion and Choices and has likely raised millions of dollars for the organization. Diane Rehm is far from objective. The same can be said about me. I am a member of Not Dead Yet, a grass roots organization opposed to assisted suicide (I am also on the Not Dead Yet Board). The difference between Rehms and myself is I am above board about my affiliation and bias. Before I give a talk that might remotely relate to assisted suicide I explicitly state my opposition to assisted suicide legislation and bias. To the best of my knowledge Rehms is not transparent in her bias. Elizabeth Jensen was quoted in the Washington Post that in her view "Rehm's participation as a celebrity guest of sorts at fundraising dinners for an organization that does extensive political lobbying, as compelling as her personal story is and as careful as she is being, is a step too far for someone associated with NPR." Link: Rehm's support of assisted suicide has been evident for decades. What is new as I perceive it is her move to become a key figure in advocating for assisted suicide as well as a leading fundraiser. Rehms efforts are not exactly a secret: the Washington Post featured an article about Rehm entitled "NPR Host Diane Rehm Emerges as Key Voice in the Right to Die Debate." Link: In the Washington Post story Rehm's noted she was well aware she was a journalist and as such she must be careful. "As strongly as I feel, I don't want to use the program to proselytize my feelings. But I do want to have more discussions about it because I feel its so important". I agree assisted suicide and more generally end of life issues need to be discussed. I do not think, however, Rehms, given her strong support of assisted suicide can do her job as as an unbiased journalist. When the subject is discussed on her radio show her bias is obvious. Opponents to assisted suicide do appear on her radio show but are given short shrift at best.

In response to criticism, not mentioned in the NYT editorial, Rehm has agreed to scale back her efforts in what Michael Rosenwald described as the "right to die debate". Exactly what does this scaling back involve? In my opinion not much. According to Rosenwald, Rehms will appear at two more sold out fund raisers. Rehm is not modifying her words. Rehms was also quoted recently as stating assisted suicide (my words) "should be a a right for me and should have been a right for my husband". Such a declarative statement is not what I would expect to ever hear from a supposedly unbiased journalist.

Rehms is in my estimation a fierce advocate for assisted suicide and is attempting to build on the wildly successful Compassion and Choices Brittany Maynard public relations campaign launched last year (Maynard's husband does fundraising for Compassion and Choices as well). As a Compassion and Choices advocate Rehms is aware of the importance of language I already referred to as rhetoric. Rehms refers to the right to die debate rather than assisted suicide. Rehms never uses the word suicide because as the Washington Post noted "Public opinion on the issue depends on how it is described, according to Gallup, which has found strong support for doctors helping patients end their lives by some painless means but a far slimmer majority favor assisting the patient to commit suicide. Not surprisingly, groups such as Compassion and Choices, studiously avoid using the word suicide." Link:

Why has Rehms views changed to include such strident support of assisted suicide legislation? Tim Graham at Newsbusters baldly stated" "Rehm is mad her husband died when she was not present. It was not then just his right to die, but her preference that he die exactly when she wanted it. She spent the night with him, and in the morning she went home for a shower. Then she received the call--come fast, he's slipping away. She missed his death by 20 minutes. She is still angry about that. If he could have planned his death, she and his family would have been there. Thats all I keep thinking about, she said. Why can't we make this more peaceful and humane. In a long interview in her office Rehm asserted I feel the way that John had to die was totally inexcusable. It was not right. She also said Kevorkian was before his time. He was too early. The country wasn't ready. Link:

I keep thinking of two words--peaceful and humane. All humans should die this way--at peace and in a humane way. Assisted suicide is not the answer. Indeed, it is an extreme legislative initiative for a social problem. It reminds me of the Ashley Treatment controversy. Doctors in surgically altering Ashley X resorted to an extreme medical solution for a social problem. My suggestion is not exciting nor will it raise money like Rehms or incite angry and heated debate. Why don't we enter into a national discussion about end of life issues. Better yet, I implore people to discuss end of life issues with their family, siblings, spouse and loved ones. If we as a society do this I would suggest many would die at peace in a manner of their choosing.

Saturday, March 7, 2015

Parenting and the ADA

I just wrote a paper about raising my son. I had great fun writing this essay as I was flooded with warm memories and the baseless prejudice I encountered. In short the essay discusses how my son and the ADA came of age. The essay appeared in the Houston Law Review and is in part a celebration of the ADA.

Below is the opening paragraph and link to my full essay.


William J. Peace

My life was transformed on July 26, 1990. I sat in front of a television and became teary eyed as I watched President Bush sign the Americans with Disabilities Act (ADA).1 He declared that the ADA was the beginning of “a bright new era of equality, independence, and freedom” for the then estimated 43 million people in the United States living with a disability.2 I was overjoyed. I believed that the ADA would end discrimination against people with disabilities. After forty years of progressive legislation designed to empower people with disabilities, disability rights law had reached its zenith. Millions of people with disabilities were not going to be barred from employment opportunities. The ADA would ensure that accessing mass transportation would be easy and accessible housing was going to become commonplace. There was no question the ADA was going to revolutionize my life and the lives of countless others. I was an American and now shared the same civil rights as those Americans without a disability took for granted. I was a true believer. 


Wednesday, March 4, 2015

The Walking Dead and Assisted Suicide at Cripping the Con

My talk at Syracuse April 9, 2014. 
The most fun I ever had presenting a paper. 
Disability Cultural Center at Syracuse is outstanding. 

Thursday, February 26, 2015

Oliver Sacks and the Process of Dying at the End of Life

Oliver Sacks is dying. I am saddened and yet at the same time I am happy. A voice of reason has weighed in on the end of life. Most readers  have heard of Sacks. He is a widely respected and his books not only resonate with the public but see very well. Among the books he wrote that have I have enjoyed include a A Leg to Stand On, and Awakenings. A few days ago Sacks wrote that he was going to die in the near future. His short essay has been reproduced and shared world wide. When I read it I was deeply touched because he was not writing about his impending death but how he planned to live. He eloquently wrote the following: 

A month ago, I felt that I was in good health, even robust health. At 81, I still swim a mile a day. But my luck has run out—a few weeks ago I learned  that I have multiple metastases in the liver. Nine years ago it was discovered that I had a rare tumor of the eye, an ocular melanoma. Although the radiation and lasering to remove the tumor ultimately left me blind in that eye, only in very rare cases do such tumors metastasize. I am among the unlucky 2 percent”.

Sacks words are a counterpoint to the typical end of life story reported in the media. Praise has been heaped upon him for good reason. Sacks put neuroscience on the map for the general public. Many of the things he wrote about I witnessed. I spent a decade in and out of the hospital and I saw a myriad of devastating neurological conditions on wards of 16 morbidly sick children. The way parents and their children faced adversity and mortality is something deeply etched in my brain. After reading Sacks poignant words originally published in the New York Times I hope the mass media will engage Sacks’ approach to his death. I doubt this will happen. He is not the sort of person an organization such as Compassion and Choices embraces. There is no fever pitch emotion or tear jerking images. There is no talk of death with dignity. There is no talk about the right to die. All Sacks focused on was life. 

What I found particularly fascinating was Sacks quoting David Hume, who upon learning he was mortally ill, wrote a brief autobiography. Like Hume, Sacks has chosen to embrace life with the knowledge his life will end shortly. Sacks plans to finish more than one book manuscript and enjoy life. Sacks wrote “It is up to me now to choose how to live out the months that remain to me”.  What struck me the most in recent days was Hume’s observation that “It is difficult to be more detached from life than I am at present”. Oh my do I get this. I have lived with a similar detachment with my body and American society for nearly 40 years. Paralysis often precludes routine social interaction. While I forcefully reject the stigma and isolation associated with disability I am detached in multiple ways. If I injure my leg I do not worry about “my leg”. I worry about “the leg” as though it is an inanimate object. This sort of bodily detachment is not unusual among paralyzed people. Far more problematic is the social detachment I often feel. There are days I cannot leave my home. I cannot deal with rude people or do gooders who insist on “helping” me. I rarely permit myself to remain at home. Frankly, I will not give the bipedal bigots that surround me the satisfaction of segregating me from society. Screw them! I am a human being. I have civil rights. 

Facing ones mortality and living with a disability share one thing in common: it offers a person a unique perspective. Sacks wrote: I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight. This will involve audacity, clarity, and plain speaking; trying to straighten my accounts with the world. But there there will be time, too, for some fun (and even silliness, as well)”.

I find Sacks words meaningful and in part undermines the highly organized effort to pass assisted suicide legislation. We are all going to die and humans will in one way or another need to process death. In so doing one must take a hard look at their mortality and life. Too many want to avoid this sort of self reflection. It is far easier to not think, rail against how unfair life can be, and become a martyr dedicated to a cause (think Brittany Maynard). Sacks is radically different for he has embraced life and the process has provided “a sudden clear focus and perspective”.  This is what those that advocate for assisted suicide legislation try to obscure and mislead in a single minded way. There is no cheating the grim reaper. There is no cutting class. There is no absenteeism.  Death will take us all and as Sacks notes the end of life is a unique experience. This sober clear headed approach to end of life does not sell well. Instead, advocates crow about autonomy, the right to die and even have a slogan: “My Life. My Choice. My death”. That is a lot of my. My my my my like a two year old with a temper tantrum.  Sacks is far too smart to buy into this sort of simplistic reductionism.  

I struggle to understand why so many are willing and eager to make assisted suicide legal. The rhetoric on the part of those that advocate for so called death with dignity laws is over the top. I for one prefer to contextualize end of life issues. Rational thought is of paramount importance. We get to die once and only once. I for one want to die well. This can be accomplished but it takes work. It requires one to talk about death and end of life issues. This is the sort of discussion few people have. I have had these sort of discussions and they are not fun. They can and often are emotionally painful. Yet I know such discussions must be had. Sacks words remind of this in a way that is enlightening. It is my hope Sacks will get the most of the last months, weeks or days of his life. What he wrote made me think how wonderful the arc of life is. We are born utterly dependent on our parents. Some people die utterly dependent upon others. The range at the end of life is as diverse as life itself. While not all states of life are remembered fondly it is my opinion the end of life is a final stage we all will experience. assisted suicide advocates fear this last stage of life. I will remain forever puzzled why such advocates want to talk about nothing more than death. Let’s talk about life and the wonders, good and bad. Lets think about lives that are worth living. So as I thought about Sacks words I had this image in my head—typical elderly white male, grey hair, suit and tie. Distinguished in a word. As I created this image I googled Sacks and images. Oh I had a great laugh at my own expense. I found the photograph of Sacks below circa 1961 riding a motorcycle. This is how I will remember Sacks. A bad ass researcher on a motorcycle. 

Tuesday, February 17, 2015

Travel: An Epilog

An epilog of sorts written a few days ago as I flew home from Chicago.

The hotel room I stayed in downtown Chicago was renovated a year ago. This is typically good news. Most but not all new hotels offer excellent access. The key word in the previous sentence is most. The hotel room I stayed at was an excellent example of good design and the obliviousness on the part of people in the travel industry who are supposed to create an ADA compliant room.

The Good.

The room was large and I could easily turn around in my wheelchair. The bed and desk were a good height. The mini fridge was easily accessible. The bathroom door was wide and had a pocket door. The room was spotlessly clean. The bed was excellent as were the linens. The television was a flat screen and quite large. The television had various ports so one could link up with a computer or gaming platform. The lighting was excellent. The closet had a low clothes rod that was easy to reach. A great feature was the lights under the bed that illuminated the floor so a person such as myself could see my feet in the darkness as I transferred. This is a great idea and seems to becoming more popular in the hotel industry.

Reality Versus Reservations. 

I requested and confirmed a room with a roll in shower and king bed. I printed out this information. Upon arrival it was clear no such room existed. All rooms with a roll in shower have two queen beds. This is a rampant problem in recent years. Virtually all hotel chains link a room with a king bed and a tub style bathroom. For me this presents a potentially tough transfer in and out of a tub. Given the fact the room requested  does not exist the manager came out to help the flustered desk clerk. The manager subsequently escorted me to the room and it was fine. I had no doubt I could handle the tub and required transfer.

The Bad.

I am glad the manager came up to the room with me. Oh, my this is ever so common. The shower head was in the highest location possible and there was no way I could lower it. The towels were also far to high to reach. The thermostat was too high to reach. The iron in the closet was too high to reach (and yes, I can iron. I do so poorly). The light switches above the bed were too high to reach. 

Some of the above sounds petty. And frankly it is. I am aware of the privilege involved. It was wonderful to have had the opportunity to stay downtown a mere three blocks from Northwestern where I spoke. What gets me is the time I consistently lose and lack of attention to detail when it comes to wheelchair access. Should not all guests feel welcomed? This is the industry standard. It is hard to enjoy travel and the check in process when small issues abound that take time to resolve. What if the manager did not escort me to the room. I would have to call down stairs and wait for an employee to lower the shower head, towels, iron, and remove a desk chair. In terms of the lights and thermostat I am just out of luck. The net result is I think no one cares. Access exists not because my existence is valued but rather it is required by law. 

Ignorance abounds.

Building on the idea that access is not valued is the ignorance about wheelchair access in the city. Bellmen at good hotels know the local area very well. I think suspect every tourist answer could be easily addressed by every person on staff. The easy answer to tourist questions is based on the assumption all humans are bipedal. If I ask about how to get an accessible cab I am given contradictory and often wrong information. If I ask about accessing busses or subway staff at virtually every hotel I have stayed in has no clue. For example, the night before I returned home desk staff  told me ordering an accessible cab was impossible. I was then assured getting an accessible cab in the morning would take no longer than 5 minutes.  As I check out I ask if the bellman could hail an accessible cab. The look of panic and confusion sweeps across the face of the desk clerk. Clearly the desk clerk doed not know what to do. I go down to the street and the bellman told me it could take an hour or more to get an accessible cab.  The bellman looked at me and asked why didn’t I call a cab company and over an accessible. Really? The minor issues I encountered could easily be resolved. Surely a large corporation could have a person on staff that could accurately answer the questions I had. All the answers I asked could likely be put on one piece of paper. The room with all the glitches could also be eliminated. I repeatedly tell hotel staff I am partially advocating for myself but far more important is the guest that follows me. The tired business man or woman that gets in late at night and simply wants to take a shower without having to call to have a shower head lowered.

The Kicker

As usual at JFK, the staff trained, and I use that word loosely, was totally unfamiliar with an aisle chair and had no clue how to to transfer me or how to use the straps that are supposed to secure me in my heat. Worse, they refused to listen to me and as a result dragged my foot on the floor. I now have a minor abrasion for a souvenir. 

Wednesday, February 11, 2015

Disability and Travel: A Time Drain

Part One

      I love to travel. I enjoy travel the most when I am accompanied by a typical bipedal person. For many who travel with me the experience is an eye opener. Frankly, I take great delight when my friends express shock when I am demeaned by TSA employees, hotel workers, airline personal and a host of others one must deal with when accessing planes, trains or a rental vehicle. Travel rarely goes as expected. The brief trip I am on now is a perfect example of the disparities for those who use a wheelchair. I tried to travel from Syracuse to Chicago but it proved to be far too costly. I decided to drive to a motel near Kennedy airport, stay one night and leave on an early morning flight. Hotels and motels near Kennedy are a mixed bag. I chose a Best Western. The price was right and it was 10 minutes from Kennedy. I had severely limited expectations. I hoped for a clean room, decent towels and a roll in shower. Upon arrival I encountered an all too typical reaction—shock. Oh my God a person using a wheelchair is checking in. I have no clue what to do. Many buttons are pressed on the key board. Confusion reigns supreme. The fact that I made the reservation online and spoke to the manager somehow has been completely lost. Ten minutes later after much consternation I am given a key. I go up to the room—a room with a roll in shower. Sorry but no. It is an accessible room-sort of. No roll in shower. No way to lower the shower head. One misplaced grab bar. I am paying well in excess of $100 and I cannot take shower? Not a chance. I go back down stairs and tell the desk person I need a room with a roll in shower. At least another ten minutes is spent tapping on the key board. The desk person then leaves and tells me he will be back. He comes back 5 minutes later and I am given a new room with a roll in shower.  

Much to my delight I meet a friend who witnessed the above. We get to the room after navigating a hall way that smelled of strong industrial cleaning products. Who knows what that smell is masking? Put that thought out of my mind. The accessible room is accessible to any slender person using a manual wheelchair. It is the smallest and narrowest room I have seen in many years. The room was massively over heated and severely cramped. My friend looked when we got to the room and said “what the fuck”. We had a good laugh. and I said welcome to land of disability. I am such a valued customer I get to spend about 30 minutes checking in and get the room I reserved on the second try. I am calm the entire time. I get it. It is just one night and what can you expect from a cheap national hotel chain. Again, my expectations were low. The room is clean and I can shower. Ah the bathroom. This is a first. There were no heating ducts in the bathroom. Now I am far from a guy that likes a bathroom or hotel room warm but this bathroom was down right frigid. Great frigid shower at 5:30AM.

The very short drive to Kennedy is a breeze. I love the Jet Blue terminal and quickly navigate to security. Only then do I realize I left my phone in the car. Ugh, proof positive it pays to arrive at the airport early if possible. I retrieve my phone from the car and return to security. For better or worse I am culled to a “special security lane” and the TSA officer tells me “wheelchair, you go to your left”. Yes, I am wheelchair man! I have no idea what to expect when I am pat down as is required. This can be lax in the extreme or akin to entering a maximum security prison. I was immediately annoyed by the TSA officer as I approached the body scanner. I was told to wait to the side and the officer in question was brusk. I am told to move to my left and go through a gate. The officer stood far too close and put his hand on my back. I hate it when people invade my personal space and never before has a TSA officer acted as this man did. I asked “please do not touch me”. I suppose he got I was annoyed and stopped me. “How do you expect me to pat you down if I am not allowed to touch me”. I instantly realized my mistake. It was foolish if not reckless to question TSA authority. The humiliation ritual must be enacted and followed without question. The fact this man was not going to be patting me down was beside the point. I went into humble, meek, and submissive mode. As it was early morning crush security took a while and my bag required extra screening. Apparently my jar of aquaphor cream caught the attention of the scanner. Aquaphor I was told is a banned substance. Another first. I have never had trouble with aquaphor. Regardless, there is unanimous agreement—I cannot board with aquaphor. Could I make a complaint? Theoretically yes. Practically no. Oh well, $20 down the drain and now I need to locate a drug store in Chicago. Aquaphor is a skin integrity must. More time will be wasted finding this cream.

So here I sit on an AirBus A 320 that was supposed to have wifi. It is not operational today as the plane is older and according to the flight attendant scheduled for multiple upgrades. So much for working on line and responding to student and professional email. Anyone that says travel is glamorous I suspect have not had much experience. Will end part one here. Part two will be how I do get into Chicago via the bus or subway.  

Part Two

I landed safe and sound at O’Hare. Getting off the plane was very slow as there were many families with young children on the plane. Cannot get upset when little kids are flying and slowing the exit flow. Mass transportation was non existent. No public busses go from the airport to downtown. No accessible Shuttle Expresses busses exist and I am asked a question I often am asked when in an airport. "Can't you walk just  little bit?". At this point I am immune and simply say no. As for the subway, the nearest accessible stop to my hotel is over a mile away. I have no idea if this information is correct. I had comparable issue with the fancy hotel I am in. I was guaranteed a roll in shower with a king bed. All rooms with a roll in shower have two queen beds and contradict what is stated on line and what I was told on the phone yesterday. This effectively makes a good sized room hard to get around. This is ever so typical. Hassles abound and slow me down. And to me that is the key to disability few get. Disability is a time sucker. First on the plane last off. Rooms description rarely reflects what is stated on reservation. Regardless I am happy to be in Chicago and looking forward to see my friend Alice Dreger whose work I deeply respect.