What Does Accessible Mean? Not Much

I like where I live. The town I reside in is largely inaccessible and town power brokers detest the push for wheelchair access. I have heard many local people state that town buildings are more important than people. What I like is what everyone likes--the town is picture perfect and its location on a lake make it a great place to live and work. There are also great parks nearby and I am not too far from Syracuse campus. The draw is understandable. Yet I am thinking about moving. Why move?  Flooding is an issue that must be addressed. It has been three months of repeated spring flooding that will be addressed July. For now, my floor remains a concrete slab. The fridge is terrible and I have lost a lot of good food as it does not stay consistently cold enough. Three of the four burners on the cook top do not work properly. There is no oven beyond my toaster oven. There is no washer dryer (the local laundromat is expensive and a social adventure). The drive way is very steep. I get a serious work out getting in and out of my wheelchair. In terms of my day to day existence, where I live is a logistical challenge.

I have been looking around for a new place. This search is frustrating. Living in down town Syracuse or within walking distance of the university is not an option. Houses in the area are old and not remotely accessible. The larger homes near campus have been cut up into small rental units. Students abound as do the elderly. For practical reasons I get why many people who use a wheelchair would not live in this area. It is bitterly cold in the winter I am in the snow belt. It is also too expensive to live in most nice areas. The slums of Syracuse are dangerous. Crime and poverty abound. What draws me here? The university. I am also drawn to the winter weather. I love the cold and snow. I love the long harsh winters.  Central New York is gorgeous and the locally grown food is spectacular.  Corn season is a joy and small farms abound.

Back to my search for a new place. I have looked on line and taken to the road. I have looked at dozens of places. Almost all rental units are inaccessible in one form or another. I have gotten good at filtering out the grossly inaccessible rentals. Google maps is a time saver of epic proportions. I now reduce my search to units listed as "wheelchair accessible". This eliminates about 97% of rentals. I have quickly learned that even those listed as "wheelchair accessible" are not in fact accessible at all. Most of these units have what I would call "old people access". The assumption is a person has limited mobility. I visited such a unit the other day and had a remarkable conversation I cannot get out of my head.

Here is the "wheelchair accessible" unit.

Based on my experience, this is the norm when an apartment is listed as "wheelchair accessible". When I balked and stated the entrance was far from wheelchair accessible the person I met was perplexed. He said "Just walk up the steps and I will carry the wheelchair for you". I replied "I cannot walk at all". The man appeared stunned. In recent years I have heard variations of his reply. Once the man regained his composure he asked: "Can't you walk just a little bit". I replied "no". I could see this man was thinking hard. "Well", he said. "I think we can find someone to carry you in and out when you need to of out". Now I am stunned. I state "That will will not work and is against the law".  He mumbles something about lawyers and asked me if  I was new to the area? I reply "no". He looked even more perplexed. "You must be new to the area. You could not live here in the winter." I replied "I have lived through two Syracuse winters without problems". He now looks around as though he is being pranked. He tells me "That is not possible. No one using a wheelchair and unable to walk could survive the winter". I thank him for his time, assert the entrance is not accessible, and it should not be listed as such. I then wished him well. He stared at me in disbelief as I got into my car.

The above exchange was out of the norm.  However, it did highlight a few things for me. First, establishing a sociopolitical link with elderly people is impossible or will at best take decades to form. The elderly fear disability and many struggle with adapting to long term deficits. The elderly do not embrace disability as an identity or perceived themselves to be an oppressed minority group. Their standards for access assume a limited degree of mobility exists. The lack of mobility is linked to a lower quality of life. Second, few rental agencies or people privately renting out an apartment know a thing about access. Many so called "wheelchair accessible" units are not remotely accessible. Many rentals advertise an "accessible room" or "grand parent suite". This usually entails a basement room accessed from the back yard and is as a result accessible in the summer. There is no accessible bathroom or kitchen. Again, the assumption is the elderly person has some mobility and will only visit for short periods of time. Third, people are clueless as to what is accessible is. Thanks to the media one and all assume any adaptations costs a fortune. Ignorance abounds and accessible is solved by creating handicapped parking with the blue wheelchair logo. Yes, access can be resolved with some blue paint and a sign. No one it seems thinks beyond the paring lot. Fourth, disability is individualized. The lack of access is dealt with on a case by case basis. People with a disability are not an oppressed minority group but rather a problem. When I frame disability as a matter of civil rights most people with no experience with disability get angry or tell me I am an extremist.

I doubt I will move. The more I look at other places where I live is looks better by the day. What gets me is the ignorance. I want to know why, 25 years post ADA, people do not know and complain about barriers to housing, mass transportation and employment. What do our secondary schools teach about disability? My gut reaction is not much of anything. I fear what kids and adults soak up culturally is that disability is bad if not a tragedy. Segregation in the form of education, transportation, and housing is acceptable. Special education kids get shunted off to the special short bus and educated in resource rooms. Adults think equal access is too costly and ugly. Budgets are limited and we must do what is best for the largest number of students. Oh, I have heard this a million times. The net result is in area like Syracuse wheelchair access is an after thought. If someone does ask about access we, out of the goodness of our souls, will provide that highly unusual individual with a means of entry or inclusion--provided it does not cost too much. The net result 25 years after the ADA was passed into law is that 97% of housing in the Syracuse area is not accessible. I have damn good reason to be angry and I object. The current lack of housing options is unacceptable.  I just wish others, bipedal others, cared. A few do of course but not many.

On Liminality

I have not been posting as much as I once did. This is due to the fact in recent months I have been weary. I am weary of being different. The social response to my existence is rarely if ever positive. My body is well out of the norm. I have a profound and sweeping scoliosis. I have long hair I keep in a pony tail. I have a tattoo. I am almost always the only person present that uses a wheelchair. Strangers say incredibly stupid and nasty things to me on a regular basis. Christians want to save my soul or assert I am being punished for mortal sins my parents committed. I have even been deemed the anti-Christ more than once. Health food junkies insist I could be cured if I took a rare vitamin mixture only they know of. Some of these people will whisper in my ear "I promise it works. I was once crippled too". Gym rats insist they have an exercise routine that will spark my muscle memory and get me walking again. These social responses to my presence, especially to my body, bother me. I am not a target of opportunity but rather a human being. I am rarely treated with respect. My presence for many is a shock. I get praised for doing the mundane. Perhaps the intent of strangers is good (I highly doubt this) but I do not want to hear it. In my estimation the strangers that accost me are not charitable or kind. Their intent is to separate me from the heard of humanity. Once separated I am left for the wolves.  The wolves come in the form of men like Peter Singer and Jeff McMcMahn who think severely disabled infants or people who experience a high level spinal cord injury should be allowed to die. The wolves also include multiple groups that support assisted suicide legislation.

The wolves are everywhere. I am surrounded by packs of wolves and I worry for others like me. Wolves do not think I share the same civil rights as others--others meaning all those with a typical body. Bodies that are clearly not physically disabled in some way. Having a different body in the words of Robert Murphy, author of the Body Silent results in estrangement.  Post disability life he wrote left him "somewhat apart from American culture, making me in many ways a stranger. And with this estrangement has come a greater urge to penetrate the veneer of cultural differences and reach an understanding of the underlying unity of all human experience".  I read these words in 1987, nine years after being paralyzed. These words and the Body Silent changed my life. I was not the problem--a revelation to me at the time. I was, as were all people with a disability, liminal members society. We were betwixt and between in the estimation of Visitor Turner. Murphy noted that "The long-term physically impaired are neither sick nor well, neither dead nor alive, neither out of society nor wholly in it. They are human beings but their bodies are warped or malfunctioning, leaving their full humanity in doubt. They are not ill, for illness is transitional to wither death of recovery... The sick person lives in a sate of social suspension until her or she gets better.  The disabled spend a lifetime in a similar suspended state. They are neither fish nor fowl; they exist in partial isolation from society as undefined, ambiguous people.

Society has changed since Murphy wrote about liminality and disability. In the 1980s people with a disability were indeed liminal members of society. We had no place. We had no rights. Our presence was an odious burden. We were barred from public schools and most universities. Our mere presence too upsetting for others, especially children (as a morbidly sick boy my siblings were never  allowed to visit me in the hospital). Fast forward to 2015. I believe we are no longer liminal members of society. We are something much worse. We are targets of opportunity. Our existence is fodder for philosophical discussion--paging Peter Singer and other utilitarian philosophers who are all too happy  to speculate if our lives are life worth living. I would contend liminality and disability have changed in that we are too numerous and expensive. We are no longer a statistical anomaly. As such, we represent a serious drain on health care dollars and the social safety net. Every request for support however large or small is met with skepticism.  We are kept on the razor edge of social and financial oblivion. If we fall off the face of the earth we will not be missed. In 2006 Alice Dreger has described what I would call liminality for the modern age: "Liminal", from "limen", "the threshold of a physiological or psychological response". And this is how you know you've found someone in a liminal state: you feel in yourself in that physiological and psychological response. The heightened visual sense, the whirring gears in your head, the lava flow in your guy. You know they are on the limit because you are suddenly there with them. All a-twitter. Oh how I feel this often. A seemingly nice person engages me and I know they will drop a degrading word bomb such as "It is so good to see you out".  The hairs on the back of my neck go up, my heart races, and I cannot disengage fast enough. Sometimes I am successful but not always. What I do know is that a demeaning effort is often used to denigrate my very existence. It is part social dominance with a dose of liminality. My existence is acknowledged and quickly determined to have no redeeming value. I have struggled with this since I was 18 years old. I have not had a place in society for my entire adult life. Worse, the last forty years of legislation designed to empower people with a disability is resented in a myriad of ways. The ADA, for example, has been met with stiff opposition and deemed an unfunded Federal mandate. I think liminality circa 1987 that Murphy eloquently utilized as a means of social analysis and critique was safe and insightful. Today, I am just fearful. Fearful of kind, caring others who will make the decision my life has no value and out of the goodness of their souls end my suffering or ship me off to a place out of sight and out of mind. If one thinks I am being alarmist I suggest a trip to the library and read some disability history. The past is grim as is the present.

All alone

I spent the early part of this week with a diverse group of scholars and emergency preparedness workers discussing the aftermath of Hurricane Sandy. The meeting is part of a large group of scholars who got a Sea Grant. It was truly an engaging experience and a welcomed departure from typical scholarly conferences. Our research was about why did people with a disability decide to ride out the storm. The concise answer is there was nowhere to go. Many of the NYC shelters were not accessible and people were turned away. In truth though, most people could not afford leave flood zones. Driving west away from the storm and staying in a motel was beyond their economic means. Some had no access to personal transportation in the form of a bus, van or car. Let me be very clear and reiterate--people had no where to go for a myriad of reasons. There were solid logistical reasons people with a disability rode out the storm. This fact has been conveniently overlooked and a few "experts" deemed people with a disability as non compliant. Technically this is correct. But take thought process one step further. Exactly how how were people with a disability supposed to leave flood zones? Were people with a disability part of the evacuation plan? In a word, no. This failure raised a fundamental question: do people with a disability have the right to be rescued. I would maintain and the court maintains the answer to this question is yes. See the Yale Law Journal article "The Right To Be Rescued: Disability Justice in an Age of Disaster". Link: http://www.yalelawjournal.org/article/the-right-to-be-rescued

Since I got home, I have spent much time thinking about the difference between the law and reality.  I  know when I enter a plane for instance the FAA has a protocol for getting me on and off the plane in the event of a disaster. I once kept abreast of such regulations but no longer do so. The odds of me surviving  a plane crash are too remote to worry about. More to the point, the reality is in the event of a crash I am going to be the very last human off the plane. Think about it: I can save myself from certain death or I can stop and try and figure out a way to help the crippled guy that cannot walk even a little bit get off a burning jet. Ah, mass transportation--no experience is better at reminding me my existence is not valued. Another example between reality and the law. Bus operators are required by law to test the wheelchair lift before a bus is put in service. Most bus drivers that know how to use a lift are unaware of this law.  The reality is buses are out and in service under the assumption the lift will not be used. The worst offenders in terms of non operational lifts are hotels. All higher end hotels typically have a shuttle service--typically a small bus or van. The wheelchair lift is not often used. In fact I have been told many times the lift has not worked in months and in some cases years. 

Clearly, a disconnect exists. The law is on the side of people with a disability but few follow the law. Indeed, the law is perceived to be an unfunded federal mandate and as such is an onerous and unnecessary burden. How do I know this? People tell me this often.

 Back to Sandy. We were in the most general sense of the term were not prepared for Sandy.  I sincerely doubt any person familiar with Sandy will question our preparedness was not adequate. The next time we get such a storm I am convinced we will be better prepared. But what I have been wondering about is the lasting legacy of the storm. How do people with a disability feel? I am not referring to how people with disability feel about Sandy and how inadequate support was at the time. How do people feel now? Now as in today. Various federal agencies covered the cost of housing for all survivors whose home were destroyed for 12 to 18 months. Most people with a disability post Sandy experienced multiple barriers social and practical. Below is a perfect example:

One year post Sandy I hold these truths to be self-evident: that, no men are equal. The weak and infirm hold up the line, are disrespected, left behind, trampled. He who is different must endeavor to be the same and keep up, or be dismissed and exterminated by broken, out-dated systems. Agencies and Programs for helping, are businesses and figureheads, not facilitators. There is no help for those who fall down. If your life was a pillar of good works, no one cares. Individuals do not exist in systems. Every person could fall down from a freak of nature, through no fault of his own and be dismissed, forgotten, smother in the shifting sands of broken systems. You are on your own. If you give your power away to barbarians, you lose your ability to take care of yourself, to revive. Link:http://disabledduringdisaster.com

 If you are not a cog, do not fit within the system problems abound. Do not deviate from the norm.  Do not request a "reasonable accommodation". Do not ask for more time to take a test. Do not ask about a wheelchair accessible room or the rent a car with hand controls. Do not try to get weighed on an accessible scale. It does not work and has not worked in years. Do not use a wheelchair lift. Do not be elderly and struggle with bills and change. Those behind you on line will huff and puff in annoyance. You must walk on a plane. If you need help you will slow down others. As in the above quote, "no men are equal". Hip hip hurray! The ADA says I am equal under the eyes of the law. That is not my reality. I am a man estranged from society and weary of others who have the power to decide what is and is not appropriate. We do not need an entrance at the front of the building. People who use a wheelchair can enter through the kitchen behind the dumpster. News flash: my sense of smell works fine and a commercial kitchen is a dangerous hectic environment. Oh, how the above resonated. "You are on your own". Oh how true. You are an individual not a part of the largest minority group in the country. You are alone. A mere individual and an unwanted one at that. Oh, we are so sorry there is no access. Sorry does not begin to cover it. 

Sports Illustrated and ALS as Inspiration

In journalism, the weakest writers in my opinion can be sports reporters. The back page of tabloids are dedicated to sports and are too often filled with poorly written articles devoid of substance. There are no Red Smiths active today. Smith was one of the most widely read sports reporters for fifty years and won a Pulitzer prize for distinguished commentary in 1976. Fast forward to the present and I often cringe when I read mainstream journalism dedicated to sports. I read a particularly bad article in Sports Illustrated by Jeff Bradely. He wrote “Super Bowl Winning Ravens LB O.J. Brigance  Embraces his ALS Fight”. I knew the article would be bad after reading the title. The military metaphor sets up an unhealthy dichotomy that Susan Sontag wrote about long ago in Illness as a Metaphor. Those that win their “battle” with cancer are heroes. They are lauded as survivors. Those that are defeated by cancer are losers. They were not strong enough to win. They are weak. They did no try hard enough. They should have found an obscure cure because that is what winners do.  Obviously Mr. Bradely has not read Sontag’s work.

It is apparent Bradley has accepted the idea that anyone with ALS that is on a vent and works is a person to be lauded. Bradely wrote: “its not often that Brigance, a Super Bowl winning linebacker for the Baltimore Ravens who was diagnosed with ALS, isn’t smiling. Even as he’s lost the ability to walk and speak over the last eight years, Brigance, 45, seems to have never stopped smiling. He shows up to work five days a week as the Ravens senior advisor for player engagement, showing all those around him what it means to push on”.

Even for sports reporting this is over the top. Contrast this Super Crip like existence with a man who has a typical body. How many men 45 years old are applauded for showing up to work five days a week. Oh, how inspirational! Better yet, Brigance is smiling all the time! Oh my, be still my heart. A crippled man is happy, works hard and is married. This sounds pretty ordinary to me.

Another smiling passage from Bradely:

“Brigane’s courage is on display a the Ravens complex each day he shows up to work. For as much as ALS has taken away from the man who made the very first tackle in Super Bowl XXXV—a blow out win over the Giants Brigance seems to never stop smiling. Ray Lewis, the Ravens former defensive leader and a man who took pride in his ability to motivate others, did not shy away from using Brigance as an example of extreme mental toughness.”

Again, would a bipedal man be characterized as having “extreme mental toughness” for simply working? Not a chance. It would be a demeaning characterization. Yet it is okay to give praise to a person with a disability who is doing the ordinary. Brigance is also modest. “In his typical self-effacing way, Brigance downplays the role he plays with the Raven”. No article is complete about a man with a disability until he is deemed inspirational. In Ghandi like fashion Brigance dismisses his inspirational existence and states that it is his wife of 22 years who is inspirational.

Please do not take my words as criticism of Brigance. He is an ordinary man who happens to have ALS.  An ALS diagnosis is devastating because most people die within two to five years. Brigance is luckily an exception  though I am sure he does not feel lucky. He appears to be well aware that he has profound advantages over others with ALS. Brigance is quoted as stating:

My first realization was the platform I had been given as a professional athlete could be very advantageous to raising awareness about ALS. Secondly, I discovered the exorbitant costs to live with ALS, even if one would choose to take life prolonging measures, such as going on a ventilator. That is when we decided to raise money to help PALS (people living with ALS) and their families to purchase the durable equipment and services to help with day to day living with ALS. We have awarded communication devices, wheelchairs, home generators, built ramps and provided home nursing care. All with the purpose of helping PALS have the very best quality of life possible. I am very proud of what we have accomplished, however there are so many others who need help. That is why we will continue to seek support from everybody we can touch to address the need.

This is where I get frustrated. Bradely’s article appeared in Sports Illustrated—a magazine that is widely known and respected. Yet he does not in any way delve into the inequalities in accessing the required medical equipment that makes life possible with ALS. Why do people go into deep debt, especially after they start using a vent? Are those without financial resources given the same options as those privileged such as Brigance? I doubt it. More to the point, why does health insurance not cover all the medical needs of those with ALS and a host of other degenerative neurological conditions. I commend Brigance for his level of awareness and dedication to helping others with ALS.  I merely wish more people would ask the basic question why.  Why do people with severe disabilities go into debt? Even more sobering, do some people with ALS choose to die and not go on a vent because they will be an economic burden on the family.

Disability, Sexuality and the Censorship of Atrium

For the last 37 years, I have routinely been asked, “Can you have sex?”  I have thought a great deal about why bipedal people feel free to ask me if I can have sex.  There is no doubt that, as a paralyzed man, my body is perceived as freakish. Despite 40 years of progressive legislation designed to empower people with a disability, negative stereotypes stubbornly cling to people with a disability.  One of those stereotypes involves sexuality. People with a disability are viewed as having spoiled identities and bodies.  We are perceived to be inferior, physically deviant, and asexual. Despite the development of a substantial literature on sex and disability, not much has changed since Tom Shakespeare published “The Sexual Politics of Disability” twenty years ago. Disability and sexuality are still treated as incongruous, if not mutually exclusive.  

The intersection of disability and sexuality is not my area of specialization. Indeed, I rarely write about sex. I have always preferred to have sex than to write about it.  The intersection of disability and sexuality has been at the forefront of my mind recently, however, because last year a controversy erupted over the publication of an essay I wrote in Atrium, The Report of the Northwestern Medical Humanities and Bioethics Program. In my essay, entitled “Head Nurses,” I wrote about  the bad girls of rehabilitation identified as the “dick police” and “head nurses.”

The “dick police” were young nurses who taught men how to catheterize themselves. “Head nurses” were young women who performed oral sex on certain hard working patients, if they so desired. Shortly before leaving rehabilitation, I received a visit from a “head nurse” who performed oral sex.  I received that visit because we were close, and because she knew that, despite repeated requests, I had been given no information about sex post injury.     

My essay appeared in a special issue of Atrium, the theme of which was “Bad Girls,” guest-edited by Alice Dreger, a historian of anatomy. Prior to publication, I worried that my essay might upset people with limited knowledge of the gritty reality that people with a disability routinely experience.  I forged ahead, though, because, as I wrote in the essay: “my experience constitutes a lost part of medical history.”

What I never imagined was that my essay would prompt an act of blatant  censorship by Northwestern University. Shortly after the “Bad Girls” issue was released, Northwestern University Feinberg School of Medicine Dean and Vice President of Medical Affairs Eric Neilson objected to the publication of my essay. Absurdly, my essay was characterized as “pornographic.”  In response to this criticism, Atrium’s editor-in-chief, Katie Watson, a faculty member in the Northwestern Medical Humanities and Bioethics Program, decided to take the entire journal off line. She told Dreger that she would not allow just one issue to be singled out for “special” treatment.

But Watson made no public announcement that Atrium had been taken off line. Now, 14 months later,  Atrium is back online as of May 19, 2015.  This is an important though belated action and in no way diminishes the fact the Bad Girls issue of Atrium was censored for over a year. During the 14 moths Atrium was censored Alice Dreger, who repeatedly objected to the censorship, made the whole “Bad Girls” issue available at her personal website: http://alicedreger.com/Bad_Girls

 I will return to the core issue of censorship shortly, but first some additional background is necessary. Prior to publication, I asked people I respect to provide comments.   A good friend and a long-time-paralyzed guy like me read a draft of my essay. When done, he burst out laughing and told me, “I think some people are going to freak.” More than one colleague read  a draft of my essay and commented “Are you sure you want to publish this? Parts of this are troubling.”  I clearly underestimated the fierce response my essay would prompt. In retrospect I should have discussed the history of nursing and feminism. I did not do so because I felt it was beyond the scope of my essay.

While most people liked what I wrote, a small number of scholars sent me scathing email. Two Catholic bioethicists deemed me a misogynist and a liar. They published a blog called “Blowing Up Bioethics: A Response to Atrium’s Bad Girls and Head Nurses.”  Link: http://www.bioethics.net/2014/04/blowing-up-bioethics-a-response-to-atriums-bad-girls-and-head-nurses/  In this essay, they charged that “the Head Nurses article perpetuates views of women, sexuality, and professionalism that best serve male power, rather than the power of women.” They argued that “the ‘bad girl’ theme of the Atrium issue allowed for an article that imported expectations of female subservience.”

Initially, I was taken aback by this gross mischaracterization of my essay, but the more I pondered the vehemence of their reaction, the more I thought of an article I had recently read in the Atlantic entitled “Disabled and Fighting for a Sex Life” by Katharine Quarmby. Link: http://www.theatlantic.com/health/archive/2015/03/sex-and-disability/386866/  Quarmby maintained: “Disabled people’s sexuality has been suppressed, exploited and, at times, destroyed over many centuries. It has been seen as suspect, set apart, and different from the sexuality of non-disabled people.”  Because I had honestly related my experience in “Head Nurses,” I was charged with being a threat because I refused to set aside my sexuality and  candidly acknowledged my sexual desire and pleasure. In so doing, I not only asserted my humanity, but undermined the myth that people with disabilities, especially paralyzed men, are asexual or unable to satisfy their sexual needs.

My essay is not “a worn-out and objectifying trope” but a forthright step in a decades’ long effort to reject the negative assumptions about disability and sexuality. Progress has been made, but as Shakespeare demonstrated twenty years ago, the interaction of disability and sexuality is tied to some powerful and negative metaphors. The trope we should be rejecting is not the allegedly “pornographic” and “misogynistic” oral sex that in fact took place in a hospital decades ago between two consenting and mutually-affectionate adults, but rather the trope found in D. H. Lawrence’s Lady Chatterly’s Lover, in which Lady Chatterly can  be satisfied only by a virile gamekeeper because her husband was paralyzed in the war.

The physical, emotional, and social abuse of persons with disabilities, and the denial of our sexuality, form a disgraceful and disturbing history that is not well known.  Few know about “the ugly laws” that restricted the movement and social integration of persons with disabilities, and even fewer know about the devastating consequences of the Eugenics movement that legalized the forced sterilization of persons with disabilities.  It was not until the 1960s, when disabled veterans returned paralyzed from the Vietnam War, that the general public was exposed to the idea of disability rights.   Building on 40 years of legislation designed to empower people with a disability, I was among the first generation of people in the late 1970s with a disability who expected to resume a typical life post disabling injury. That typical life included sex, family, education, and employment.

Tuppy Owens, a sex therapist and author of Supporting Disabled People with Their Sexual Lives, believes that people with a disability must fight for their “sexual citizenship.”  But sexual politics is not yet a significant part of the disability rights movement. It should be.  The fact is that people with disabilities encounter discrimination on multiple fronts, and that includes barriers against being empowered to explore their sexuality. Taking down the “Bad Girls” issue of Atrium, and treating my essay as if it was pornographic or misogynist, is an act of censorship that reinforces the social isolation of persons with disabilities and falsely affirms the inability of persons with disabilities to establish intimate relationships.  It is an act that is completely incompatible with the truth and with the central tenets of academic freedom. Although the censorship ended after 14 months it remains a shameful act that should embarrass those at Northwestern University who purport to value that freedom.

            In terms of sexuality, not much has changed with regard to the sexual options open to people with disabilities.  The denial of one’s sexual identity and of the physical pleasure sex provides is potentially devastating to any individual. My essay “Head Nurse” unsettles conventional social norms. I, as a paralyzed man, am not supposed to be sexual, and I certainly am not expected to acknowledge receiving sexual pleasure in the form of oral sex. To deny the realities I wrote about in my essay is to deny the truth – and it is a truth people should know.

Katie Watson, in an email of April 2, referred to the controversy my essay created as the “Atrium drama.” But there is more than just the denial of sexuality and disability at play here. In recent years, university medical centers, like the one at Northwestern, have too often been consumed by corporate branding. Their self-presentation focuses less on the realities of patient care than on the projection of feel-good stories meant to attract well-insured and paying customers.

Watson admitted that this concern with “branding” played a significant role in Neilson’s reaction to my essay:

Our administration views Atrium as a “Northwestern Medicine” publication. I disagree with that characterization (it’s a med school publication) but just as the “Bad Girls” issue came out the med school & hospital entered a branding agreement to have a single identity that raised new sensitivities. As a result, they were very worried that publication of your article in what was newly considered a NM publication might suggest our institution/hospital does not value nurses, or that it condoned sexual relationships between patients and providers in the hospital. I strongly disagreed with their assessment, and I took every single back issue of Atrium down in an act of solidarity, because I refused to single out any one author or issue.

Watson went on to explain Atrium could not go on as it once did. Watson felt bad and asked for a favor:

Until this ridiculous situation is remedied, when people click on your article title (I’m reconfiguring format so articles can be accessed individually) would it be okay with you if they got a message with your email saying to contact the author directly for a copy?  (And we’d send you a pdf of your article individually if you don’t already have that.) This goes without saying, but as a private citizen with free speech rights protected by the First Amendment you can respond to those requests however you like.

I was horrified by Katie’s message.  This was censorship at the bequest of a desire to brand a hospital. I replied:

Thank you so much for your explanation re. Atrium. Needless to say, and for the same reasons that you state, this is unacceptable. However, to help you out of your bind, I will agree with your "solution" as a tentative step while formal measures are taken to protest the University's censorship of my article. But I have one important qualification: Where my article would ordinarily appear, in addition to the reference to my email, the site must state: "This article has officially been censored by Northwestern University. Therefore, anyone wishing to read it should email me at wjpeace9@gmail.com"  

            My experience with Atrium and the censorship of my essay and other scholars who made contributions to the issue edited by Dreger makes me long for the old days. As I wrote in my Atrium essay, “I am not suggesting we return to our primitive past,” but when corporate branding distorts and hides the truth it presents far more problematic ethical conundrums than my decades’ old experience.  Obviously, sexual relations between patients and health care professionals is inappropriate.  I accept this as a given. What I object to even more, though, are poseurs in white coats who are dedicated to branding medical institutions by censoring legitimate scholarship and attempting to erase the lives and experiences that they deem embarrassing.

But Things are Better, Right?

Things are better, right? I am often asked this question by those who know little or nothing about disability. The correct answer is yes. If I state "sorry, but no things are not better in terms of accessibility" I am perceived to be needlessly negative. Others instantly conclude I have lost all semblance of balance because we have the ADA. That law I am told solved all disability related problems. We are world leaders in terms of disability rights. Hence I have no grounds upon which I can complain. I am biting the hand that feeds me. Conveniently ignored is the charity model of disability and how grateful I should be.

Are things getting better? The answer in terms of air travel is no. Things are not better. In fact things are much worse when people with a disability try to fly. Statistics from the 2013 Annual Report on Disability Related Air Travel Complaints demonstrate flying is more difficult for people with a disability. Do not believe me--read the Report of the Secretary of Transportation to the United States Congress, July 2014. Link: http://www.dot.gov/airconsumer/annual-report-disability-related-air-travel-complaints Under the Air Carrier Access Act airlines are prohibited from discriminating against people with a disability. Airlines are also required to regularly review all complaints under the Wendell H. Ford Aviation Investment Reform Act for the 21st Century and report the findings to the Secretary of Transportation.  Complaints are categorized according to the passenger's type of disability and nature of complaint. A disabled passenger is classified as:

vision impaired
hearing impaired
vision and hearing impaired
mentally impaired
communicable disease
allergies (e.g. food allergies, chemical sensitivity)
paraplegic
quadriplegic
other wheelchair
oxygen
stretcher
other assistive device (cane, respirator, etc.)
other disability

Snarky insert: "other wheelchair". So much for the humanity of the person using said "other wheelchair". The wheelchair is recognized but not the human. Ironically this correct in many ways. If traveling with a bipedal person any question or comment asked is almost always directed toward my travel partner.

The alleged discrimination is characterized as  follows:

refusal to board
refusal to board without an attendant
security issues concerning disability
aircraft not accessible
airport not accessible
advance notice dispute
seating accommodation
failure to provide adequate or timely assistance
damage to assistive device
storage or delay of assistive device
service animal problem
unsatisfactory information
other

Snarky insert: "Damage to assistive device" translates into airline industry speak for we broke a wheelchair. Airlines have a penchant for breaking wheelchairs of all types and no insurance carrier in the world will insure a wheelchair placed on an airplane. Why do insurance companies refuse to insure wheelchairs? Airlines break them all the time.

Things are better, right? No. In 2013, the most up to date statistics available, U.S. and foreign carriers  reported 25,246 formal complaints. U.S. and foreign carriers were also subjected to 19 cease and desist orders designed to reduce the number of complaints filed and were fined $500,000 for these violations. Here is the statistic that impacts me most directly.  Nearly half of all complaints reported, 11,768, concerned the failure to adequately assist persons that us a wheelchair. The numbers here tell the story:

Complaints circa 2004--10,193

Complaints circa 2013--21,965

Are things getting better? No. Things are much worse. I would suggest that the number of complaints are double if not triple what is reported. Every year airlines are fined for undercounting disability related complaints. Three major carriers were fined $100,000 numerous times for such under reporting.

I think I have established things are worse in terms of air travel. The skeptic might note that travel in the post 9/11 era is worse for all people that set foot on a plane. This assessment is correct. Flying is miserable. Lines are long, security oppressive, and the control measured over people in airline terminals extreme. I accept all this and silently grit my teeth. But this is what others do not see or experience. Trained employees tasked with helping me on and off a plane that cannot speak a word of English. Employees that have no training and are totally unaware of how to get me in an aisle chair. Employees that do not know what an aisle chair is. Broken aisle chairs or an aisle chair cannot be found. None of this includes rude behavior or nasty comments about my existence. None of this eliminates the most common question I now get: Can't you walk a little bit?" When I state "no, I can't walk a little bit" the reaction is muffled shock or utter confusion.

People with a disability that read the above will likely nod their head in sad recognition. Yes, travel for me sucks. The difference is the ingrained and deeply felt hostility the airline industry has for people with a disability. When I assert my civil rights and obviously know the law and am a seasoned traveler this merely increases the animosity directed at me. What I found most interesting is that my least favorite airline, Delta, was the run away winner in the number of complaints it received. American was second. Two airlines I avoid when possible. My favorite airlines, Jet Blue and South West are much further down the list.  So things are definitely not better. I will know things are better when the number of complaints are in the hundreds and not tens of thousands. I will know things are better when I go to an airport relaxed and not feeling as though I am prepping for war. I will know things are better when access is not at the forefront of my mind at all times. I will know things are better when I feel and am treated just like every other bipedal person in the terminal and on a plane. This day is one I sincerely doubt I will see in my life time.

Road Trip Hits and Misses

My son got a job in Grand Teton National Park in northwest Wyoming. As of Monday, he is a seasonal worker and will be living in the heart of the park. I must confess I am a little jealous of his youth and his freedom--he has absolutely no ties holding him down. I am also happy for him because he has a lust for travel that is being satisfied. Hence seasonal work in various national parks is ideal for him. After much discussion, we decided the best way to get him and his gear west was to drive. Air travel is too much of a hassle for him given his recent travel history (too many one way flights and moves). We made the 2,200 mile trek from New York once before when he was a boy. It was a great experience and we decided to duplicate that experience a decade later. Most of our time in the car was spent talking about life, literature, anthropology, ethics, assisted suicide, racism and the unrest in Baltimore, etc I cherished this trip because I know that as he gets older we will not be spending as much time together. This makes me sad and happy at the same time. I joke I spawned an adult yet he will forever be my beloved little boy.

What I found fascinating about our trip in terms of disability was our hit and miss experiences at low and mid end motels. Heading west we stayed one night in Illinois and one night in Nebraska. These two nights combined with filling up the gas tank twice a day illustrated the extreme disparity in what is imaginatively called wheelchair access.  Curb cuts abound but few conform to ADA codes. Aisles in convenience stores are narrow and most are grossly inaccessible. No junk food for me! Accessible bathrooms are a rarity. Clean accessible bathrooms are even rarer and akin to a diamond. A few times I pointed out the lack of access. The response was a dull look of boredom. An engaged employee would simple say a basic sorry. Inaccessible sandwich shops and road side restaurants were often not accessible. The lack of access was about what I expected and reinforced the fact I am largely restricted to big box restaurants that conform to the ADA. Thus kiss any authentic local food experience goodbye.

My food options were severely restricted as were my options at motels. My motel options were limited to national brands like Days Inn, Holiday Inn Express, etc. I no longer even bother to ask about an accessible room at small town motels. The sad reality is in our expansive nation physical access remains a real challenge--a thought that dominated my mind driving across Nebraska (insert corn joke). There is a vague idea that a law was passed a long time ago and that it solved the problems of all people with a disability. This misconception is reinforced by all the little blue wheelchair logos one observes in parking lots and near entrances to buildings. These signs, deemed by my son as "little blue signs to nowhere", are devoid of meaning. Symbolically they make people without a disability feel better. I for one fail to see the point of these signs when they point to a ramp that is blocked by fire wood or car wash fluid at the local gas station.

The reader without a disability might be thinking, okay I get it, wheelchair use is a major inconvenience but at least the national brand motels are barrier free. Nope. Not true. In Nebraska we stayed at a cheap national brand hotel. It was the least accessible room I have ever been in. I could not reach a window. I could not reach the towel rack. I could not reach the thermostat. I could not reach the shower head. I could not turn my wheelchair in the bathroom. There was so much furniture in the room I could not turn. I could only get to one side of the bed. Essentially I could get in the room and move in a single direction. To turn I would have to back out and turn around outside the room. Once inside I was utterly dependent upon my son. This is not acceptable and I did not complain. This was access circa 1978. We were passing thorough and would be in the room for less than 12 hours. There is no question the people at the desk had no clue what access meant and this gets to the heart of the problem--ignorance. In Illinois on my way home I stayed at a Holiday Inn Express. In general, these motels are nice and accessible. Quite clean, decent linens, comfortable beds, and located within a mile of the interstate. What more could one want. I called ahead and asked if an accessible room with roll in shower was available. After a few minutes I was told yes such a room was available. I asked the clerk to double check with the manager. A few minutes later I was again told yes we have an accessible room with a roll in shower.  I show up ten minutes later and suddenly the accessible room with a roll in shower was occupied (that had one room with a roll in shower). There was no sorry just a spooked look that indicted the desk clerk wanted me to disappear. This is my norm. Life is never simple, travel always presents unnecessary barriers both attitudinal and physical. These barriers limit my life. They limit my experience. They set me apart as different. They set me apart as unimportant and for employees in the travel business I represent extra and unwanted work. This is most obvious in the airline industry that has a deep seeded hostility to people with a disability.

I thoroughly enjoyed my time driving across the country. I put 4,500 miles on my car in 10 days. I spent a lot of time with my son who was disconnected from the internet and gaming world. We had fun and yet the looming un articulated presence of disability was always present. Where to stop for gas? Let's wait for the giant truck stop. Where will we stay for the night? Better wait for the exit with a cluster of motels.  Where will we eat? Select the least horrible big box food chain or let's not eat and just snack for lunch. I hope at some point in my life I will have a bipedal experience. Not the walking part but the privilege of choice. The privilege of not thinking. The privilege of just wanting to eat or selecting a motel and knowing it will be hassle free. The privilege of parking and not encountering a blocked ramp. The privilege of privacy. The absence of being screamed at or being deemed a remarkable human being because I can drive and get my wheelchair in and out of the car by myself.  The privilege of equality. This is what I thought about the most on my drive home. How and when will I be equal. In this regard, the ADA put the law on my side. In theory I am equal. In theory I share the same rights as the bipedal people that stare at me. But I have never truly felt equal. I have never been treated equally. My experiences are in the estimation of others always "special" in some way. Screw special. The only special privilege I desire is equality.