Transportation Inequality

I love to travel. It is among the best ways to learn about the diversity in the broadest sense of the term.  For instance without driving across states such as Kansas, Iowa, and Nebraska one truly understands the term "America's bread basket". Our cities are also remarkably diverse. We have the fast paced energy of New York City and the cool chill of Seattle and Portland. We have dense urban areas and stunningly isolated ranges like the Wind River Valley in Wyoming. Our national parks are impressive and it is beyond my ability to describe their beauty. Not even Ken Burns multi part documentary adequately showed off the national parks.

There is one constant for me when I travel. Access to mass transportation for a person such as myself that uses a wheelchair is routinely difficult in the extreme. Buses, trains, subways, taxis, planes all needlessly create chaos that undermine the ability of people with a disability  to travel. Airlines routinely destroy wheelchairs. Wheelchair lifts on buses are somehow broken or the drivers refuse to use the lift often claiming ignorance. Accessible taxis are as rare as diamonds in many cities. Subways in the vast majority of cities are grossly inaccessible. Rental car companies often do not have the car with hand controls rented weeks or days in advance. Shuttle buses at airports are not always accessible. Hotel shuttle buses are also typically not accessible. Profound and difficult problems abound. Discount travel is pure folly. Airbnd and Uber have been hostile to people with a disability and been sued multiple times. Hotels usually have a severely limited number of accessible rooms all too often located next to the ice machine, across from the elevator or another undesirable location. Restaurants have what I call "cripple tables", like hotel rooms, the location is terrible.

Clearly the presence of people with a disability when traveling is a problem--an individual problem for which others are ever so sorry exists. I do not want an "I am sorry" I want to be equal to the bipedal hordes that the country is designed for. The lack of access has been on my mind since I left Boston. Unlike the NYC subway system, the Boston T is remarkably accessible. About 80% of the stops are accessible. In NYC I would guess at most 20% of MTA stops are accessible. Essentially the NYC subway system is useless if you use a wheelchair. I do not even bother to consider it as an option. This graphic more than my words highlight just how bad the NYC subway is in terms of access.

First, the MTA map for bipeds:

Now a map for the MTA accessible stops. This does not take into consideration all the broken elevators which is a sizable percentage.

I have looked at the maps above for over a month. I shake my head in wonder and concern. How is a poor or middle class person using a wheelchair going to get to work on a timely and inexpensive way? In NYC it is not the subway system. If you use a wheelchair and want to use the mass transit system in NYC the bus is the best option. MTA bus drivers may not be friendly but they rarely complain about operating the wheelchair lift. No mass transportation system is ideal.  My only complaint with the Boston T was the elevators. They are filthy and the stench can be overwhelming. Worse, they are used by some as a toilet or a place to smoke pot and crack. What I felt in Boston using the subway was freedom. I had the freedom to get from point A to point B quickly inexpensively and efficiently. The only other city I could say the same about is San Francisco and BART. The fact severely limited mass transportation options exist helps explain in part why so many people with a disability are unemployed--a number that has not changed since the ADA was signed into law. So pardon me if I remain cranky about all the ADA parties, marches, and heaps of praise the law has received the last few weeks.

My good friend and colleague Stephen Kuusiso is like me in that we are both weary of ADA celebrations. Life for we people with a disability is hard. This is not a woe is me observation. It is simply a fact. In Kuusito's blog Planet of the Blind he recently wrote he is a "sour puss".

I feel as if the celebrations are taking place while Rome is burning. What a sour puss! 

As of today, only 25% of college students with disabilities actually graduate.

As of today, 70% of the disabled remain unemployed.

As of today, airlines destroy wheelchairs in transit at alarming rates.

As of today, public transportation remains marginally accessible in most cities.

As of today, I could go on and on…

Sour puss indeed.

“But Kuusisto,” you say, “haven’t we made significant progress since 1990? Can’t you see that?”

I’m not sure.  Most businesses and universities think of the ADA as “an unfunded mandate” and treat it with disrespect.

Progress. How we Americans love progress. Progress and the ADA do not do much good for the person with a  disability that wants to travel. If I fly to Chicago, Denver, Seattle, San Jose, New Orleans and dozens of other cities and ask a myriad of people how can I get from the airport to downtown the most common reply is "I have no idea". I find this unacceptable. So please let's stop talking about how great the ADA is. The ADA was a start, nothing more than a start that has not been supported by the general population of the United States. What I hear again and again is the ADA is an unfunded social mandate. This disturbs me. The ADA is Civil Rights legislation designed to protect the rights of people with a disability. Frankly, the law is weak, poorly written, and ignored. I am not happy and will continue to express my displeasure. Screw the ADA parties. Go form a protest, practice civil disobedience and make the nation accessible to all. The ADA sure has not been all its cracked up to me.

Being dissed at Wegmans

While I despise the summer heat I love the produce available during the summer. Corn season has just begun and I can say with confidence that I eat corn on a daily basis in July through September.  I truly love the local farm stands in Central New York. It is not just the corn but the local produce that is truly remarkable. When I was in downtown Boston for a week I ate too much prepackaged food and went out to eat far more than I wanted. Hence, I have been eager to cook and today, despite a full belly, I went wild in Wegmans produce section. Peaches, nectarines, watermelon, multiple varieties of berries, mangos, plums etc. abounded. The peppers, onions, carrots and beets looked wonderful. I was ridiculously happy shopping. The store was not crowded a big deal for me as the produce section is very difficult to navigate when crowded. Better yet, the automated check out line was a very short. I sharply prefer self check out. I bag things in a particular order so that I can get to my car and unpack items more quickly.

As I was nearing the end of scanning all my items I noticed an agitated woman began getting closer and closer to me. I was not sure why she was getting so close. I am pretty fast at self check out. I know the system and perhaps the only difference it is that I bag in an order that might not make sense to bipedal people. Nothing I thought can bother me today. Oh my was I wrong. The agitated woman in question talks loudly over my head and states to an employee standing in the area "Help him. He is going too slow". The employee replied "I asked him if he needed help already and he always says no".  The woman in questions heavily sighs and says "You know some of us have jobs and are in a rush to get things done. The nerve of some people". The employee responds "He is pretty quick but gets stuck on non bar coded produce and has a weird way of packing that takes a while". Okay, I have had it at this point. I stop back up, turn and tell the employee: "Your engagement with the other customer and entire conversation is point blank rude. Please do not talk as if I am not present. I am a human being". The employee is stunned. I turn to the agitated woman and tell her "You are rude and disrespectful. To talk to the employee as if I did not exist is as shocking as it is grossly inappropriate. You are a bigot". The woman's face flushes red in anger as she mutters something under her breath and now rapidly starts tapping her foot on the floor. In classic passive aggressive behavior I instantly slow down. I am precise with my bagging. I consider and rearrange every item that goes into my three bag system. I do not double tie each bag but triple tie them in an effort to slow down even further. This is not a good character trait but it does prevent me from cursing and really losing my temper. All know what I am doing. The Wegmans employee is smirking. She knows exactly what I am doing as does the agitated customer.

I thought about this innocuous encounter on my drive home. The assumptions made by the agitated woman were as basic as they were wrong. She assumed I was unemployed and had nowhere to go. My life was unimportant. She was in every way possible superior economically and socially. I was slowing down a mover and shaker. Think Tom Wolf and Bonfire of the Vanities. She was the female version of Sherman McCoy or Oliver Stone's Wall Street protagonist Gordon Gekko. Somehow I doubt we were thinking along the same lines. Silently I wondered if I engaged her could I make her see the light? Had she ever read Tom Wolf's Bonfire of the Vanities? Did she know the phrase Wolf used to title his book referred to the burning of objects that were condemned by the powerful as representations of sin? Did she know the phrase itself typically refers to a specific bonfire that took place on February 7, 1497? Did she know who Girolamo Savonarola was and that he burned books, paintings and other objects? A sin took place at Wegmans; the woman in question did not consider that my life had value. Bioethicists would write my personhood or autonomy was violated. For me, this interaction was Goffmanesque. This was not just about disability. I would venture to guess that others have had similar encounters with this woman. Certainly the elderly struggling with arthritic fingers and perhaps other minority groups. The entitlement was the shock for me. It reminded me of one of the most quoted sentences in Wolf's book:

There it was, the Rome, the Paris, the London of the twentieth century, the city of ambition, the dense magnetic rock, the irresistible destination of all those who insist on being where things are happening—and he was among the victors! He lived on Park Avenue, the street of dreams! He worked on Wall Street, fifty floors up, for the legendary Pierce & Pierce, overlooking the world! He was at the wheel of a $48,000 roadster with one of the most beautiful women in New York—no Comp. Lit. scholar, perhaps, but gorgeous—beside him! A frisky young animal! He was of that breed whose natural destiny it was…to have what they wanted.

A breed apart. Destiny that is preordained. Utter crap in my estimation. Give me the person with a unique body. Give me the person that has led an interesting life one with hardships that forged character. Give me FDR! The man in my opinion would not have been president had it not been for polio. Indeed, our nation would be quite different had FDR not had polio and become president. Polio forged his identity and by extension his presidency. FDR did not hide his disability nor concoct an "elaborate deception" as Hugh Gallagher maintained. One and all knew FDR was crippled. The nation needed him and the electorate chose to ignore the existence of his physical disability. They saw what the man could do and the nation was desperate for a leader. Americans were riveted by FDR's inaugural address when he famously stated; This great nation will endure as it has endured, will revive and will prosper. So let me assert my firm belief that the only thing we have to fear is fear itself. No doubt these are two great sentences. But many forget the sentence that followed shortly there after: Our collective difficulties, thank God, concern only material things. I love this line as well. For me, it makes me aware I am not alone. I am not the only cripple that has endured social injustice.  I am not the only person this woman has thoughtlessly demeaned. I am not an inferior human being but rather one of many. The many have power. The many will endure. I will endure. To reaffirm the power of endurance  listen to not only FDR original broadcasts but those by his wife Eleanor and the following American Radio works program. Link: http://www.americanradioworks.org/documentaries/roosevelts/ 

The ADA 25th Anniversary: I am Not Happy nor in a Celebratory Mood

The Americans with Disabilities Act, the ADA, is 25 years old today. For the last week I have been reading article after article about how successful the ADA has been. I have read articles by professors of disability studies that are self aggrandizing or devoid of insight into the real lives of people with a disability. I have read articles by journalists that are hopelessly naive. I have read multiple "feel good stories" that annoyed me to no end. I read far too many articles that concluded the United States is a world leader in disability rights and that any current complaints by people with a disability are likely made by malcontents. What was missing in  all the articles I read was any semblance of nuance. A person unfamiliar with disability, 80 % of the non disabled population, could and would rapidly conclude the ADA solved all problems people with a disability might encounter. They likely moved on to the next story secure in thinking if I or a loved one ever becomes disabled all is well and support services are at worst adequate and at best superb. Any person with a disability knows this is a fantasy. The social support net safety net is in fact designed to keep people on the edge of financial and personal disaster.  

Given the above, I have been especially cranky the last week or two. I have not articulated my unhappiness to others. Well, I have been vocal with my Boston based friends, especially leading up to the big ADA celebration in the Boston Common that I attended with others.  About two thousand people attended the celebration. Multiple stories appeared in the news and an NPR station interviewed me. Link: http://commonhealth.wbur.org/2015/07/boston-common-americans-with-disabilities-act-anniversary I found this article and its audio report particularly bad. I did not provide the feel good sound bite required for the celebration and supposed equality the ADA created. No one wants to discuss the weaknesses of the ADA and the fact there is no social demand the law be enforced. The spin in all news stories has been positive in the extreme. For exampled State Attorney General Maura Healey stated “Because of the ADA, businesses and employers cannot deny people employment based on a disability.” People with disabilities are no longer isolated and segregated by states. Because of the ADA, transportation and public facilities must address the needs of people with physical and mental disabilities.”

 Healy is correct--the ADA states this. No one however wants to discuss why the unemployment rate among people with a disability has not changed in twenty five years. No one wants to discuss why access to mass transportation is inherently difficult. No one is interested in years long waiting lists for accessible housing. In Syracuse where I work the waiting list for accessible housing is four to five years long and only 5% of housing is accessible. The incapable conclusion is that the ADA from a sociocultural viewpoint is an utter failure. The law is on our side but from my experience no one cares and when it comes to money; "reasonable accommodations" are the first line items cut. All will cluck about how important wheelchair access is or providing ASL interpreters for the deaf but inevitably a long silence occurs and the "reasonable accommodations" are cut from the budget. One person might state we can address the issue if a person with a disability complains or a deaf person appears and asks about an interpreter. To me this is even worse--it individualizes disability and by itself is grossly misleading. The ADA is a civil rights law on par with widely accepted and respected civil rights. To get this idea across I often tell others I have been told when I try to enter an establishment I am often told "Sorry, wheelchairs are not allowed" or "Wheelchairs must be seated in the back corner". I suggest substitute "wheelchair" with "black person", or "woman" and people would be out raged. When it comes to disability based discrimination there is no outrage.  Somehow disability remains different. Support for the civil rights of people with a disability is passive. It is a choice. 

The only article I read this week that was insightful was limited in scope (though important) and directly affects many of those I teach. In "Where's the Outrage When Colleges Discriminate Against Students with Disabilities" by Leonard Davis in the Chronicle of Higher Education. Link: http://www.chroniclecareers.com/article/Where-s-the-Outrage-When/231799/ Davis writes: 

Today, many colleges pride themselves on being accommodating to all students — but in fact, far from aiding the cause of Americans with disabilities, colleges have been instrumental in blocking those rights. July 26th marks the 25th anniversary of the Americans With Disabilities Act. As we celebrate the accomplishments of that law, let’s not forget that while colleges have embraced efforts to promote diversity and the rights of people of color, women, and LGBTQ students and faculty, they have fought a less noticed war against disability rights. In the past, a good deal of the march toward the Americans With Disabilities Act was driven by activism and lawsuits brought by college students against their administrations — even while administrators were lobbying to eviscerate such legislation. There was a time when there were virtually no students with disabilities on campuses. Blind and deaf people were sent to residential schools where they learned trades. People with mobility impairments couldn’t get out of the house to commute to colleges, and dorms were inaccessible. Learning-disabled people often didn’t make it to higher education.

I came of age in the pre ADA era. I fought to get on MTA buses in New York City. I despised the very low standard people with a disability were held to. Being accepted to a university and graduating  was considered a great accomplishment for a person with a disability. Going to graduate school, in my case an Ivy League institution, was perceived to be heroic. I rejected this line of logic at the time and today. What I did academically was ordinary for a man my age that wanted to be an academic. I did what my non disabled peers were doing--living an ordinary life. This is not what society expects. We people with a disability are denied the ordinary. If I graduate from Columbia and father a child I am an amazing person--damn near super human. If I utterly fail, it is understandable. My paralysis suddenly enters the equation and is used to justify my failure. 

Discrimination against people with a disability has changed. It is as rampant today as it was when I was in college and graduate school 25 years ago. What has changed is the sort of discrimination students encounter. What takes place today is superficial compliance with the ADA. Inane and heated discussions take place over trivial maters. The new "active" wheelchair logo is placed in parking lot spots designated for disabled people. This change is discussed in detail while the library under going renovation will remain inaccessible for several years while renovations are under way. No one wants to discus why blind people needlessly struggle to access scholarly writing on line. For instance Stephen Kuusisto recently wrote a post at Planet of the Blind entitled "My Everest: University of Michigan Press". The University of Michigan Press, known for producing many excellent texts concerning disability, is difficult to access in screen readable formats. Kuusisto, a distinguished scholar and poet, notes that anyone who thinks disability related barriers were solved by a law passed 25 years years ago is sorely mistaken. Disability remains a difficult social issue. The problem is not technology but the willing ignorance of others. He wrote anyone who thinks disability is easy is dishonest. 

Displacement narratives of stamina and disability which are designed to inspire the non-disabled trouble the bejeezus out of me. This is because ordinary blindness, the daily “living with it” blindness, is often dreadful. One way blindness remains grim concerns the ongoing and considerable difficulty of acquiring accessible books. As a blind scholar I must say this is my Mt. Everest. Getting ahold of books I can read is not only difficult, it’s often nearly impossible. When the “i” word enters into disability land, it means more often than not, that inaccessibility is essentially part of the built environment.

This is exactly why I consider the ADA a social failure. Inaccessibility is built into the socially and physically created environment. Inaccessibility regardless of the disability itself is part of the fabric of life. I am more than troubled. I am angry. I get angry every time I hear the ADA praised and how great life is for people with a disability. I am ready to spit nails of fury when I hear politicians that know nothing about disability state the United States is a world leader in disability rights; that we as a nation serve as a model for other countries to follow but have not signed the UN Treaty on disability rights. If this were the case Kuusisto and every other blind person in the United States would flawlessly access books on line. Every publisher would demand its books be readily accessible. ASL interpreters would be at every public lecture, political rally, protest and a myriad of other events. When wheelchair access is brought up it would be a top priority for let's say an architectural firm. Beautifully designed access would be the "brand" of the corporation. All this of course is a fantasy. Access in the broadest sense of the term remains an unwanted add on; the ramp is attached to the side of a building or placed in the rear out of sight. Architects do not want to mar their design with a federally mandated ramp. 

I will know the ADA is a grand success when on any night of the week I can go out with friends and not put access issues as the prime consideration. The mental gymnastics that take place for the ordinary are an ever present reminder the world is designed for bipedal people. As one and all were praising the ADA I was thinking about going out to dinner with friends. The logistics involved were daunting. How does a restaurant deal with a manual wheelchair user like me, a person that uses a scooter, and a person that uses a power wheelchair and has a service dog. Oh, and we had one biped coming with us.  Instantly Friday and Saturday night were eliminated. Too crowded for crippled people. Forget the local Asian restaurant. Too narrow to accommodate us. In the end I often eat at big box corporate restaurants. I do not want to do this. I prefer local establishments. But the corporate places offer more space and maybe even an accessible bathroom--an out of the norm "accommodation" that requires me to change what I drink. When all of the above does not take place on that day I will be equal. I do not expect to live long enough to experience that sort of equality.  

Boston Then and Now

I have decidedly mixed feelings about Boston. I vividly recall flying to Boston as a kid in large part because it was the first plane trip I took alone.  I do not recall much of the trip aside from the fact my sister lived in a really old house in Marblehead. The trip was significant because it ignited a lust for travel that has lasted a lifetime. I sourly recall the Boston Bruins breaking my heart many times as a Ranger fan. As a boy I tried very hard to convince myself that Brad Park was better than Bobby Orr--an effort that failed every time. Worse, my brother-in-law Mike  liked the Bruins and teased me a good bit every time they beat the Rangers and won a Stanley Cup. As an adult, I remember Boston for a few romantic trips I took with my now ex wife (I am not sure if this is a good or bad memory). What I remember the most about Boston is an over night trip I took two years ago when I,  along with many other disability activists, testified before the Massachusetts legislature's joint Committee on Public Health in opposition to H-1988 which would have legalized assisted suicide in the state. I wrote about this trip in December of 2013.  Link: http://badcripple.blogspot.com/2013/12/i-testified-in-boston-problematic-trip.html Much went wrong on this trip. My testimony was terrible--I am quite good at public speaking but really screwed up that day. I had plenty of excuses. I had a sleepless night, the room where testimony was given was hot, it snowed all day and I lost my gloves. The drive home was twice as long given the fact the roads were really slick with snow and ice. Add in the city of Boston does a terrible job removing snow from the sidewalks. Despite all this the city looked great.

 
Boston looks great today. But, there is always a but, I would prefer the snow and cold. Thanks to a deeply respected colleague who has housed me for an extended period of time  I have been able to enjoy the city. How I miss the vibrant nature of city life and all it entails. My beloved labrador Kate loves city life too. Lots of people and stimulation for her. What I have enjoyed the most is the Boston Common. The Common, not commons, looks quite different today.

The summer heat has radically altered my schedule. I wither in the heat. Wither is being kind. I suffer in the heat. I am at a high risk for heat stroke. I take heat warnings seriously. To adapt and avoid the heat this morning Kate and I headed out the door at 6AM. I was instantly taken back in time to when my son was a baby and I lived in the heart of Manhattan. Although I had lived in the city a long time I had never seen the city come alive. My son changed that upon delivery (pun intended). Delivery trucks abounded, men were power washing the sidewalks, trash was being picked up, portable toilets were being removed from the Boston Common, tree men were grooming the tress etc. All this was wondrous to Kate--especially the portable toilets. Her nose was seriously out of joint and had a thrilling morning. As I enjoyed the city coming to life I began to wonder. Is disability related access part of this norm? Despite lots of brick sidewalks the city of Boston is quite accessible. The subway, the T, is largely accessible unlike most cities across the USA. I have really enjoyed accessing the T. I have never used the subway or train on a regular basis. My colleague has been kind and patient as I learned the system. It is amazing what bipedal humans take for granted but here I digress.

As I have navigated the T I have been struck by the large number of people with a disability out and about. I have seen a great number of people using a wide array of wheelchairs and scooters. I have observed two guide dog teams that stuck out to me as both dogs were German shepherds.  I am not suggesting Boston is ideal in terms of access. Far from it, the city struggles badly during winter and lousy snow removal forces people with a disability to be house bound for long stretches of time. This is utterly unacceptable. And I return to wondering. Why is a lack of access acceptable? Why do the elevators in the T smell so bad the acidic smell of urine hurt my eyes and lungs? Of course this is a result of the homeless using the elevator as a safe toilet--another reality of city life unacceptable. What a world we live in and I wonder why Americans embrace capitalism;but I digress again.

One of the highlights of my visit will be meeting Lisa Iezzoni for the second time. She is a Boston based physician/scholar who is writing about how inaccessible hospital are to people with a disability and the resultant health disparities. Yes, hospitals remain grossly inaccessible both physically and culturally 25 years post ADA. This problem is ignored and to the best of my knowledge Iezzoni is the only person doing research on this subject matter. I find her writing far too polite. This is not a criticism. She publishes in first tier or prestigious journals and is providing the bed rock scholarship that can enable further work and subsequent activism to take place. What Lezzoni has accomplished to date is critically important. Bioethicists write about the coming "tsunami" of Baby Boomers who are aging into diverse disabilities. Our health care system is woefully unprepared for this population who will be accessing the health care system in vast numbers. What is clear in Lezzoni's work is what physicians and health care professionals are reluctant to acknowledge: health care disparities are rampant. A quick glance at the statistics for people with a disability, especially women with a disability, reveal routine screening such as mammograms and pap smears,  are far less likely to take place. The statistics in fact are quite grim. Link: http://content.healthaffairs.org/content/30/10/1947/T1.expansion.html

The lack of access to health care I would argue is the most important public health care problem this nation has ever faced. Frankly, getting in the door of a practicing physician by itself is deeply problematic. This is not an isolated or regional problem and is in fact a growing problem. The reasons for this refusal is not what physicians claim--it is too expensive to make their offices accessible. Most offices simply state the office is not accessible nor can they suggest a physician or office that is accessible. I have been down this road many times.  I find this distressing because of the ignorance involved. At issue is civil rights. My civil rights are being violated a central point very few grasp.  Getting through the gate keepers is virtually impossible and appears to me to be the typical policy of most physician offices. The Boston Globe wrote about this two years ago as have many other newspapers.

More than one in six Boston doctors offices refused to schedule appointments for callers posing as disabled patients in wheelchairs, researchers at Baystate Medical Center reported Monday in a study of specialty practices that highlights obstacles to routine medical care.
Legal specialists say the practice violates a federal law requiring that people with disabilities have access to appropriate care.
Callers turned away by physicians in Boston and three other cities were mostly told the offices lacked an exam table that could be raised and lowered or a lift for transferring a patient out of their wheelchair. In some cases, practices were located in buildings inaccessible to people in wheelchairs.
Gynecologists in the four cities had the highest rate of inaccessible practices, with 44 percent informing patients that they needed to seek a specialist elsewhere. The findings were published in the Annals of Internal Medicine.
“Many doctors may not be aware that they need to see patients with disabilities,” said study leader Dr. Tara Lagu, an academic hospitalist at Baystate in Springfield and an assistant professor at Tufts University School of Medicine. “I’m shocked every time I hear from patients in wheelchairs that they can’t get an appointment with a urologist or gynecologist or that the doctor wants them to come in an ambulance for transfer to an exam table by an emergency medical technician.”
https://www.bostonglobe.com/lifestyle/health-wellness/2013/03/18/boston-specialist-physicians-can-accommodate-disabled-patients/jl0X744wsMoZVSUiGU4JIK/story.html

Here I relentlessly return to my observation about Boston as a city coming alive well before business hours begin. Why is wheelchair access and so called "reasonable accommodations" for all people with a disability not the norm? Why is not a central part of a hospital as an institution coming alive.  I would suggest the most basic reason for a lack of access is simple--we people with a disability are not in positions of power. We are not present when decisions that can profoundly alter our life are made. Hence I harken back to the slogan "nothing about us without us". As I age and need to access health care on occasion the more I find the slogan "nothing about us without us" all too apt. This is without question not a medical concern but rather a social problem. Not much has changed since Robert Murphy made the very same point in his book the Body Silent.

Who Rode Out the Storm and Why

 In the event of a disaster I have no doubt the lives of people with a disability hold little value. I think about this every time I access mass transportation. I silently acknowledge that should something go disastrously wrong not a soul will help me. There is no calvary for people with a disability. We are expendable. Based on research conducted over the last year there is no doubt in my mind FEMA and other federal or state organizations place people with a disability at the bottom of the priority list. Multiple practical and social reasons exist for this devaluation. Disaster studies make for scary reading especially if you have a disability. We will be the last, and I mean the very last, people saved. Pets have a better chance at survival and rescue during a disaster.

The last sentence above is not hyperbole. It reflects the experience of people with a disability during Hurricane Sandy, a storm that swept up the east coast and caused a stunning amount of damage. For me the lasting legacy of Sandy is one of human rights. The question to emerge from Sandy is sub basic: do people with a disability have the right to be rescued in event of a disaster. I would answer in the affirmative. I expect to be saved if a disaster occurs yet I know this will not happen. This is the gulf between the law and life as we people with a disability experience it. The mere fact the right to be rescued is a question indicates how devalued the lives are those with a disability.  In "The Right to be Rescued: Disability Justice in an Age of Disaster"  Adrien Weibgen wrote:

disasters are socially constructed. How we choose to respond to the urgent human needs that arise from large-scale weather events determines the degree to which these events become “disasters.” As disasters become more frequent, social inequalities will be thrown into sharper relief, and the consequences of such inequalities will become increasingly dire. Communities will be forced to grapple with two essential questions: in preparing for disasters, how “ready” is ready enough, and to what degree should identity and social status determine who is put in danger, left in misery, and left to die? Link: http://www.yalelawjournal.org/article/the-right-to-be-rescued

Who is left to die? Who will suffer? These decisions are made in the heat of the moment and too date have not been adequately addressed. This has led disaster planers to ask how can we do better. How can we rescue people with a disability in the event of a disaster. This represents a significant shift in disaster management. We are not blaming people with a disability for riding out storms. The fact is there is no place to go. Shelters in New York City were largely inaccessible.  Add in the majority of people with a disability live on the margins of social and economic oblivion and it is hardly a surpise most chose to ride out the storm.

What is desperately needed is what does riding out the storm entail? This is poorly understood and tapping into the reasoning of people has proved illusive to researchers. Thus I am imploring those who rode out the storm to take the survey below. Time is tight so I implore people to take the survey as soon as humanly possible. Link below

https://www.surveymonkey.com/r/?sm=TlGD2FwTeFYWkmvpwy3zSYOsAmnps5dWfzS56xrmavw%3d

July 4th is Not For All

National holidays will always resonate with me.  July 4th, Memorial Day, Thanksgiving, Christmas, and President's Day etc. all prompt the same memory--severe illness and hospitalization. Name a National Holiday and I can recall being extremely sick. Growing up my siblings teased me about my penchant to get sick at the worst possible time. I did not do this one or twice. I did it a lot. So pardon me for not getting over excited about July 4th or any other day we as a nation celebrate. I also heard too many horrific and overly nationalistic speeches when my son and I were involved in the Boy Scouts. The end result is I get pretty cranky in the days leading up to July 4. This year my mood is especially grim because on July 26 the ADA will celebrate its 25th anniversary. As I looked out my window in the pre dawn light I thought about the ADA. Why do people with a disability remain unequal?  Why do I feel so estranged from other? 

I pondered the above for quite some time. Then I read Stephen Kuusisto's blog post "Disability at the 4th of July". Link: http://stephenkuusisto.com/2015/07/03/disability-at-the-4th-of-july/ Kuusisto recalled the many people with power that vigorously opposed the ADA. He wrote: 


Yes, the ADA is now grown up. Her longevity is remarkable because boy oh boy, did she ever have some enemies, especially when she was just a kid. (Remember Clint Eastwood? How about Antonin Scalia?) Yes, there was a considerable cast of characters (who we can also call a person) who ardently wished to kill ADA in her cradle. I, for instance, have a great memory. I recall Tom Delay saying on the floor of the US Senate in 1990:  “The cost to the nation and the economy is going to be dramatic. This goes way beyond the bounds of reason.” Or how about noisome blab from the National Review:  “Under the guise of civil rights for the disabled, the Senate had passed a disaster for U.S. business.” ADA’s enemies proposed that euthanizing the child was really for the best. Notice the use of the phrase under the guise of civil rights, as though equal opportunity and civic life are, after all, really, just a fiction, or, to put it more succinctly, they’re a true story only for some. Perhaps the most vigorous opponent of ADA was (and remains) the Chamber of Commerce, which even today, bloviates that accessibility guidelines kill small businesses. (In order to believe this, its crucial to think that “the disabled” are insufficient customers, who live alone, who have no families and spouses and children who also shop.) 

Kuusisto is too kind to those that opposed the ADA. Tom Delay was a bigot. Clint Eastwood, also a bigot, went on the make Million Dollar Baby, the most widely watched disability snuff film.  I love the line above "ADA's enemies proposed euthanizing the child was really for the best".  Today, with prenatal testing people with Down Syndrome and Spina Bifida are simply not born--no need for euthanasia; though we must try to pass assisted suicide legislation just in case we live too long and, gasp, acquire a disability. Simply put, the ADA did not destroy small or large businesses. The real trouble is indeed the Chamber of Commerce. It is my neighbor. It is your colleagues at work. It is the carpenter, tailor, sales person who helped you pick out an item clothing, your boss, a bus driver etc. The reason the ADA has failed culturally is simple and complex at the same time but shares one thing in common: ignorance, willing ignorance.  Major Owens, a Democrat who served from 1987 to 2003 in the U.S. House of Representatives, noted: 

There's a kind of sick security some people get out of keeping away from people with disabilities. They are running away from any situation that's not totally pure and all-American and that requires them to do any thinking.

People choose to remain ignorant when it comes to disability. People choose not to think. Symbolically disability remains a symbol of the fragility of the human body. We people with a disability are an ever present reminder that life can go askew at any given time. The response was and remains fear--out of sight out of mind. We created institutions and enacted laws to segregate people from all typical others. We choose not to think about disability. Oh, how many times I have heard "Sorry we never thought about wheelchair access". Great, that is the perfect and most polite way to insure a person with a disability will be excluded. This brings me back to July 4th. My little town is having fireworks. I love fireworks and yet I rarely if ever attend a fireworks show. I do not attend because in terms of wheelchair access there will be no accessible bathroom (sorry, we did not think of it). Will there be a safe dimly lit trail to where a person with a disability can enjoy the show (sorry we did not think of it). Will there be a safe way to get to and from your car (sorry we did not think of it).  Am I being too harsh? No. According to the National Highway Traffic Safety Administration fatalities related to car and pedestrians is at a historic low point.  There is one exception: people with a disability. The number of people hit by a vehicle increased last year. Why? Blocked curb cuts or lack of a curb curt that forces a person such as myself into the street. Hence my concern about safety post fireworks. I am sure you can guess why there is a blocked or absent curb cut. "Sorry we didn't think of it".  Ignorance can and does kill people with a disability. Cheery thoughts for July 3. No worries, I will put only fake happy face tomorrow so others will feel comfortable and not think of disability.

Patient Care is Incompatible with Branding

The branding of hospitals, rehabilitation centers, and out patient clinics from a revenue generating perspective has been and remains successful. The downside to selling a brand is that patient care is secondary to profit. Do not misunderstand me. There are without question dedicated and excellent health care workers in every hospital and rehabilitation center in the country. Physicians exist who deeply care and enhance the quality patient lives and can help shape an independent future. There are countless wonderful physical and occupational therapists that teach people post spinal cord injury life lessons. This was true in 1978 the year I was paralyzed. It is equally true today nor is such dedication limited to those that work with people who experience a SCI. For example, I vividly recall a speech therapist working with my father after he had a stroke. My father was depressed and did not want to talk. This therapist asked me "what excites your father?" I suggested she ask and talk about horses (my Dad owned thoroughbreds). To communicate about the horses one needs to be able to read the Racing Form, the Bible of thoroughbred racing.  And that is exactly what she did--she established a thoroughbred vocabulary undoubtedly on her own time. As a result, my father's speech rapidly improved because he had something of substance to talk about. I could tell countless stories about health care professionals who went above and beyond what any person could have expected.

I cannot stress this enough: my concern with branding has nothing to do with health care workers that provide primary care but rather the institutional system in which they work. The prime flaw as I see it today with physical rehabilitation post spinal cord injury is the length of stay (LOS). A vast literature exists on LOS but the general consensus is post SCI a person circa 2015 receives about 55 inpatient days at a rehabilitation center. There is no question LOS has decreased significantly.

The decrease in rehabilitation duration is found for all SCI impairment categories. For patients with incomplete paraplegia, median LOS decreased from 68 to 29 days, and it was reduced from 84 to 42 days for patients with complete paraplegia. Median LOS was reduced by two-thirds for those with incomplete tetraplegia (from 104 to 34 days), and almost as much for patients with complete tetraplegia (from 142 to 59 days). The pressures of managed care, as much as improvements in medical and rehabilitative expertise, seem to have driven the rehabilitation LOS declines.3

LOS is the tip of the proverbial iceberg for what constitutes rehabilitation today post SCI. What is deeply worrisome is the degree to which branding directly impacts patient care. My concern is what takes place during the 55 days one is an inpatient at a rehabilitation facility. What is the intensity of rehabilitation? What is the nature of the rehabilitation process? Does a patient get one on one care or are patients with a similar level of injury given group therapy sessions? The article I quoted above is the first study explore what happens during the 55 inpatient rehabilitation days one can expect to receive. Link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3066504/ It would be interesting to know how many hours were spent on various types of care but that only addresses issues directly related to the body and fits squarely within the medical model of disability. How, I wonder, does a young man adapt to SCI without any exposure or knowledge about disability?  Consider a young man, 18 to 25 years old, who experiences a sudden SCI. One day he is walking around like others and in the blink of an eye is paralyzed. How much time does this man have to adapt to SCI? Less than 55 days. This is not humanly possible. This is evidenced by the fact over 64% of people post initial injury are readmitted to the hospital within 30 days of being discharged. 

Rehabilitation centers are not shy about selling the idea they have a unique brand to offer potential patients. Indeed, google the words branding and rehabilitation and a plethora of rehabilitation centers will appear. Examples abound:

From Nebraska:

Madonna Rehabilitation Hospital, a national leader in rehabilitation care and research, has modernized its branding and developed a new website to help individuals quickly access accurate information.

In partnership with Lincoln-based marketing communications firm Thought District, the hospital began the rebranding process by researching the opinions of employees, former patients and families, as well as physicians, insurance providers and discharge planners.

Spinal Cord Injury Recovery

Our spinal cord injury treatment focuses on mobility.  Our patients who have spinal cord injuries have a unique desire to improve.  Our recovery program helps patients regain their independence and reach their maximum potential.  Since every injury is unique, the treatment plan is also unique.

The most efficient treatment options are the ones that fit the needs of each unique individual.  We begin Spinal cord rehabilitation after a patient is medically stable following a spinal cord injury (SCI).  A person who has a spinal cord injury may experience a complete or partial loss of motor functioning due to a severed or partially damaged spinal cord. The difference in SCI care at Eagle Crest Care Center spinal cord injury rehabilitation center is derived from our team of experienced medical professionals who implement active, individualized care plans that concentrate on improving a patient’s functionality and mobility.

Different treatments may include:

• Teaching patients how to maneuver a wheelchair in a store
• Prepare meals
• Bathing with little-to-no outside assistance.

Throughout the treatment and In the end, they gain more than just increased mobility, greater independence, and confidence to help them reach their recovery goals. At Eagle Crest Care Center, we have the unique opportunity to help SCI patients achieve a higher quality of life in a home-like, community-based environment that is designed to promote emotional well-being and physical comfort.

From Shepherd Rehabilitation, Atlanta

Shepherd Center is a brand that is fortified by the actions we take every day. It encompasses the services we provide, the respect and compassion we show patients, families and fellow employees, and the pride we share for working in an environment that is a Center of Excellence. Our brand

is reflected in the communications we develop, such as letters, hospital literature, faxes, forms, banners or T-shirts.

You play a crucial role in sustaining the strength of the Shepherd Center brand. The materials you create to communicate with internal or external audiences offer an opportunity to reinforce our brand positioning through consistent usage of the logo, color palette and typography.

Shepherd Center relies on individuals like you to serve as brand stewards. By understanding these concepts--and the applications specified in this document – you help protect the qualities and attributes important to our image.

I find the prominent branding of rehabilitation disturbing. One is not just a potential patient because  once admitted a person represents the hospital brand itself. Does this mean those individuals in need of inpatient rehabilitation that do not reflect the brand are turned away? Does the brand determine care and its focus? I think so. At issue is not just one rehabilitation facility but rather all of rehabilitation itself. Consider Kessler Rehabilitation in New Jersey, a high profile facility. Christopher Reeve went to Kessler in 1995 after he experienced a high cervical injury. Founded in 1949 with just 16 beds, by the 1980 Kessler had expanded exponentially. By 1990 Kessler had 322 beds, a dizzy array of out patient facilities, and was designated a "Model System". In 2003 Kessler was acquired by Select Medical.  Select Medical itself experienced signifiant growth in the mid to late 1990s and Forbes listed it as one of the best managed companies in the nation. Growth for Select Medical has been continuous.  Today, Select Medical owns long term acute care, inpatient medical rehabilitation, out patient physical therapy and contract therapy, and employees 30,000 people. Select Medical owns a "family of brands" in 32 states. As I read this history I thought, first, its founders must be extremely wealthy, and second, what a well greased skid an individual could find himself on. Acute care provided by the Select Medical. Rehabilitation provided by Select Medical. Out patient care provided by Select Medical. Perhaps even long term care (nursing home) provided by Select Medical.  All this could be done with the human being treated unaware one corporation determined their care. 

In terms of patient care post SCI, my concern is two fold: first, contract work is often short term. Employees come and go. I read many reviews written by health care professionals about working for Select Medical. To many state that productivity is more important than patients they treat. The work environment is stressful. Benefits are minimal. Concerns and suggestions to improve the therapeutic environment get lost between and facility and the corporation. Understaffing is common and many complained about the lack of raises if one remain at one facility for a long period of time. One former employee sourly noted "Most operations are run on shoe string budget which doesn't always jive well with patient care needs. Challenging to walk the tights rope of corporate expectations, patient care and staffing requirements. Maintaining morale and collaborative efforts between staff an management strenuous".  Second, with just 55 days of rehabilitation people who experience a SCI do not establish the sort of life long relationships I did. Rehabilitation is too short and precludes closeness with staff. Beyond time the pressure brought to bear on PTs, OTs, and nurses is a major problem. Patient care and a focus on profit are and always will be incompatible. Despite the great advances and hard work of health care professionals doing the hard work with patients I must say I yearn for the old days. There was no talk of cure or complaints about management. There was one expectation for health care workers and patients. Work hard and all shared the same goal: independence and a renewal of one's life with the dedication and support of staff.