Feel Good Stories: Asking all the Wrong Questions.

I am a sucker for feel good stories. My reaction though, is two fold. First, like most people, I get teary eyed and am touched by how remarkably wonderful people can be. My second reaction is quite different. I get an uneasy feeling and wonder this story does not sound right. I do some online research, rational thinking and more often than not the facts that prompted one's heart to flutter are hopelessly skewed. One such feel good story floating around the internet is about a New Jersey waitress, Liz Woodward, who wrote a thoughtful note to two tired firefighters who had spent the night putting out a fire that was difficult to extinguish. She wrote a wonderful note and gave them a free meal.

 
No doubt this was thoughtful. The diner did not comp the fire fighters a meal, Liz Woodward did. The firefighters were touched. They deemed her gesture selfless and posted the above photograph on Facebook. The story is nice but not so touching to merit much more than a small story in the local Southern New Jersey newspapers. So, yes as a hawker would cry out: "But there's more!" The more is Liz Woodward father Steve who is a quadriplegic. Oh, the tragedy! The firefighters felt compelled to reward Liz Woodward and of course the tragedy in the form of her father Steve is really draws people. It is also where the story falls off the rails. From ABC News the headline is "Firefighters Meet Paralyzed Father of Waitress Who Performed Selfless Act".  Dozens of similar headlines and stories abound in the mainstream press. All reports state the previous December Liz Woodward started a go fund me page on behalf of her father so he could purchase a wheelchair accessible van. She was hoping to raise $17,000.

From ABC News:

"The firefighters brought Phillies tickets for Steve, according to WPVI, which could be the first time Steve gets to leave the house other than doctors' appointments in five years".

"Weddings, funerals, celebrations, and graduations... He's missed them all. Family picnics on 4th of July or out to the park to watch fireworks  (we???ve always watched them out his hospital window). We???ve shared everything with him on cell phones in videos and photographs since he couldn???t get there"

"we're just firefighters [a modest Paul Hullings]. We're also caring people, we want to be part of everybody's life". 

Liz Woodward: "The message is to be kind to each other, to pay it forward when you can, that even the smallest gesture can change somebody's life".

I am not a cold hearted person. I am thrilled that Woodward's father Steve can now afford to purchase a wheelchair accessible van. I am delighted the story has prompted donations to soar to $77,000.  I am even happier a wheelchair van company has loaned the Woodward's a van at no cost to the family. Like the vast majority of the population Steve Woodward can come and go as he desires. Yet I am ill at ease and more than a little bit angry about how the Wooward's story has been spun. Pity and charity are at the forefront. One family has benefited. Agin, this is great for the Woodward family.  This however is seriously misleading. When I read about this is in the news this is what I wondered:

Why has Woodward not left his home in five years aside from doctors appointments?

Why did he miss so many family events?

Why did he miss 4th of July fireworks?

Why could he not go to the park?

Why did Wood ward not have an accessible van for years on end?

More generally why do wheelchair vans cost so much?

Where was the so called social safety net that could empower Woodward to get out and about on a regular basis?

Where were the humble firefighters who stated they wanted to be part of every one's life?

Where was the disability community who could have supported Woodward?

Why did doctors nurses, social workers, and other health care professionals that knew Woodward was a virtual shut in for years and years act on his behalf?

The sort of questions I pose do not prompt a warm and fuzzy reaction. Indeed, I sound harsh in the extreme. Sorry, but I find the Woodward family's experience all too common. It is in fact the norm. The denial of basic services for people with a disability are shockingly inadequate. The Woodward family got lucky. Christina Symanski, also a resident of New Jersey, did not get lucky. She got help. She got help to die. With the support of others she died legally via VSED--voluntary suspension of eating and drinking. Essentially she dehydrated to death. Yes, this is legal and is endorsed by Compassion and Choices, the leading organization that advocates for assisted suicide legislation.

The Woodward family was caught in a Catch 22 situation. All wanted the best for Steve Woodward. His problems were less physical than they were and remain social. Caring health care workers knew his situation. Perhaps they advocated on his behalf and failed. I have no doubt he is beloved by his family who also did their best for him. They likely were frustrated in the extreme and likely encountered one brick wall after another. This is one's life when disability enters the picture. Poverty and disability go hand in hand. The ADA has done nothing to change this dialectical relationship. Sadly, no one cares. Perhaps that is too hard a viewpoint. No one wants to think about disability that I know for sure. Disability is something that affects other people. Say a prayer or make the sign of the cross and hope disability never happens. This is a very bad plan. The cultural exclusion of people with a disability has been the norm in the United States. Disability is without question culturally bound. Ask the Woodward's how their life has changed since Steve was paralyzed. I am sure they were stunned at the lack of resources available. How does a middle class family afford a wheelchair accessible van when they cost up to and can be more than $80,000. Creating a go fund me page is understandable. But what is the larger social cost? Ableist beliefs are reinforced. Stereotypes are created and reinforced. Disability is an individual's problem; it is not an issue of Civil Rights. The Woodward's got unlucky. We as a society get to pick and choose who gets "help". Wrong! People with a disability do not want help we want equality. We want a typical life. This is not too much to ask.

Able bodied privilege is a given until one ends up in the land of disability.  This is the land of non typical bodies even our heath care system is not designed to accommodate. Entry into the land of disability is shocking to those not exposed to disability. Hell, it is a shock to me 35 plus years post disability. How can society condone the exclusion of a class of people? Why does disability seem to inevitably lead to poverty. Why are some people so fearful of disability they are hailed as strong or heroic figures when they commit suicide. Think Brittany Maynard.

The failure of an individual and we as a nation is an utter lack of imagination for what could be. Imagine this. People with a disability are an important part of society. Exclusion does not exist because it is socially unacceptable--an anathema. Every small town to large city demands equal access. Ramps and elevators abound. Screen readable print matter is the norm. Deaf interpreters abound and Deaf culture is celebrated. Quiet rooms for those with sensory issues exist in every building constructed. All houses and apartment building are accessible as are all our institutions and schools. The lack of access in the broadest sense of the terms is met with outrage. Change is demanded by every person in the nation. Disability contains no stigma. Schools teach stories about how people with a disability were once excluded from the public by ugly laws. Children learn about how women terminated pregnancies because of conditions like Down Syndrome. This comes as a shock to the young who ask why? Why did that happen? Why did ablism exist? These are the type of questions we should be asking and not in some sort of far away future. I know I will never experience such a dystopia but I can dream. If my dreams come true all will benefit and the Woodwards would not need to benefit from luck.

25 Years Post ADA Academia Remains Hostile to Disability

Stephen Kuusisto has put up a number of posts at his blog Planet of the Blind. No doubt, he has started August with a bang. His posts have deeply touched me as they reflect my experience as a scholar with a disability. Believe me, we scholars with a disability are a rare breed. The rarity of professors with an obvious disability is a problem that has a deleterious impact on the entire university. An unintended ableist message is sent to the academic community. Disability in the most general sense of the term is an unlucky individual's problem. Worse, the university gets to decide what is and is not a so called reasonable accommodation. Oh my how universities balk when accommodations are requested. The resistance to providing the legally required reasonable accommodations has not improved since the ADA was passed. I would contend the resistance to making the required accommodations has gotten worse (especially for students with learning disabilities). Reasonable accommodations are perceived to be a one off. In other words, the person requesting a reasonable accommodation due to his or her disability is deemed narcissistic and an economic drain. ASL interpreters cost too much! We have no idea how to convert a file or academic program to a screen readable format! Sorry, we never thought about wheelchair access. The list of ADA violations is seemingly endless. When I point out that the ADA is civil rights legislation and enforced by the DOJ I am deemed bitter or have a chip on my shoulder. In failing to provide reasonable accommodations universities nationwide are violating Federal Law. They are violating the civil rights of all people with a disability. When the discussion is framed as a civil rights issue lawyers are put on the speed dial. ADA coordinators schedule suddenly gets busy, phone calls are not returned, and one can quickly discover you are thought to be a pariah. This quite easily accomplished when you are the only scholar with a disability on campus or attended a conference.

The deeply rooted discrimination against people with a disability is most evident when scholars such as myself, Kuusisto and others try to attend academic conferences. Kuusisto has written about this as have I. In "The AWP and Disability Inclusion" Kuusisto detailed some of the problems he has had over the years attending the annual meetings.

1. Hotel in Chicago tells me I can’t come in with my guide dog. Old game. Get the manager. Checking in takes 45 minutes. Dog is thirsty and hungry after plane trip.
2. Ask for accessible handouts at panels. None. Shrugs from panelists. Eye rolling.
3. Complain to national office about accessibility problems with conference website. Eye rolling.
4. Fall down while entering a big room where a popular panel is about to take place. The panelists walk over me while I’m on the floor. One of them is very famous. He talks about empathy in his prepared remarks.
5. Ask for escort to find things. Takes 1 hour to find accessibility services table. Miss the panel.
6. No one is educated about helping disabled people. Lots of “I’ll see what I can do…”
7. Wheelchair users have lousy time with everything from transportation to access.
8. Deaf people have to fight to get sign language.

This is a modest list. It could easily include dozens examples of the blatant bias blind scholars experience. I have had many similar experiences when I travel and request a reasonable accommodation. It is very rare to receive a prompt request in large part because no one ever thought of it. Access information is like gold--a rare, and for me, highly valued commodity. For me, this information means making a flight or not. Attending an academic session or not. Being able to shower or not. Go to the website you say. Good luck. Test this for yourself. Find the AWP information about disability on the organization's website. It is buried and useless. Here are some highlights I have experienced.

1. The removal of the illegal and potentially dangerous ramp leading to a dais platform is not made. The request was made three days earlier and repeated daily. Hotel employees appear 10 minutes late, take 15 minutes to break down the ramp and reorganize the room. My one hour session is reduced to 30 minutes. The session is ruined. I am deemed unreasonable and the cause of the failed session.

2. Tables at most meeting sites are so high I cannot see or use them.

3. Buffet food is so high I cannot even see what is offered. Hotels bar are usually inaccessible.

4. The hotel shuttle bus lift is broken. The meeting organizer asked if an accessible shuttle bus was available. They were told yes. They were not told the lift has not been operational for six months. The lift to the pool, breakfast nook lifts are also not operational.

5. Accessible rooms were not reserved for the block of rooms secured. I am not eligible for the steep discount associated with attendance.  Hence my room cost can go from about $150 to $400. The contract signed cannot be broken. I check in and check out. I hope I can find a nearby accessible hotel. Lucky me, I find a hotel but they only have an accessible room with tub. I need a roll in shower. I get to sleep but cannot shower.

6. Finding any information about my options for mass transportation is a mystery. The person I speak with after a dozen calls go unanswered tells me the organization is only responsible for access at the meeting venue itself. The person suggests I call the hotel. I call the hotel and they tell me to call the academic organization. I am further told their responsibility to provide access is limited to the hotel property. A loop of misinformation starts.

7. I would like to ask a question. All microphones are too high to reach. I request that at least one microphone be lowered. This takes three days to arrange despite daily requests. Success occurs on the fourth day as I check out.

8. No list of accessible bars, restaurants, taxis, etc. in the area are available. No list of cultural institutions is available in terms of access. I am firmly trapped in hotel.

The word to describe the above used by Kuusisto: demoralizing. I find it demoralizing and isolating to attend academic meetings. The impact this has had on my life and career has been profound. Kuusisto has written: "I think the AWP [insert any other academic organization acronym] needs to organize a committee on disability access best practices". I have spent much time with an academic organization to improve access for scholars with a disability. I was on a Presidential panel about access and helped produce a report for the organization that took about a year to write.  Fast forward two years and none of the modest recommendations were enacted. Kuusisto noted "I know disabled folks who continue to go to the conference. They believe earnestly that showing up will change the dynamics. I no longer believe this". I was a true believer at one point. I now believe efforts to be inclusive for scholars with a disability are doomed to failure. I further believe academic panels created to improve disability access are designed to exhaust the few true believers. I further believe there is no interest in accommodating scholars with a disability. Kuusisto concluded:

The problem for those of us with disabilities is that the permanence of physical or neurological difference is unbridgeable and the built environments that occlude or obstruct our progress are still omnipresent. The Americans with Disabilities Act told us boldly to come into the village square or the agora. We’re here. We like our colleagues. We want them to like us. We feel sad about the eye rolling. The good news? Eye rolling can be a temporary condition.

Oh, the eye rolling that takes place when a scholar makes a request for a reasonable accommodation! It is truly impressive. The disrespect is extreme. The lack of care and interest is obvious. Much clucking takes place about how important diversity is. Oh yes we place great value on accessibility I am told time and time again. Yet I encounter barriers, social and physical, at every academic meeting I attend. Kuusisto and I are what I call pre ADA cripples. We went to school and fought tooth and nail to be "mainstreamed" and get a good education. Not only did we push but so did our supportive parents. The bias we experienced was extreme and in some cases confrontational. The law was not on our side. For instance we did not have the right to a public school education until IDEA was passed in 1975. After fighting to get into a graduate program I was told I had to be the best or star student. I did not mind this one bit. I was full of piss an vinegar and embraced this challenge. It was like putting a red flag in front of a bull. But what about all those potential scholars that might not want this challenge? Careers were ended before they started. This says nothing of the humiliation I experienced when earning my PhD at Columbia University. Accessible bathrooms were virtually non existent. Ramps conformed to no known code. Barriers abounded. Many wondered why I was in the PhD program. I was told more than once that "I was wasting a spot for a person who was going to go on and get a job". The assumption was I was unemployable.

What is a crippled scholar to do? I suppose the tiny population of professors that exist handle disability based bias differently. In the UK Stephen Hawking revels in his fame and rarely discusses disability based bias. When he makes a societal observation I cringe. For instance, he supports assisted suicide--this is all too easy for him as no one is going to suggest we end the life of the supposedly smartest man on the planet. What Hawking ignores are all those on the "dole" who are disenfranchised and struggle to live day by day. And me? I hate to admit it but I really care what others think of me. I try not to think along these lines. Yet at heart I care about how others perceive me. I also know I will never measure up or down to societal expectations. The bar is set low or impossible high people with a disability. A normal life is impossible and we are reduced to a metaphor--think inspirational existence. Some people with a disability make a career out of this.  Kuusisto wrote:

 I don’t care what people think of me–I’m a person with an evident disability living in a civilization that sentimentalizes disabilities. The blind man who climbs a mountain can dine out forever giving talks about inspiration–talks that tell millions who live in thrall to sad confirmations that their lives could be bigger if only they dared live bigger. I have a general disdain for these sorts of talks, and in truth would rather have a colonoscopy without anesthetic than listen to the treacle that far too many celebrities with disabilities willingly toss at conferences and conventions. Inspirational speaking is always missing the point–that life is life, and lived with better ideas it’s a better business. Life is not cavalier emulation. It’s something else.

Like Kuusisto, at some level I do not care what people think of me. If I did know what many strangers thought of me I could not exit my front door. I honestly do not want to know. I share Kuusisto disdain for inspirational talks that are in fact not inspirational at all. They are just destructive.  Such talks enhance ableist beliefs that must be undermined. In the end, my two go to emotions are depression and anger. Lately I have been very depressed. Yet I adapt and try and turn the depressing I feel into a healthy anger. Anger I told Kuusisto is useful. I joke angry cripples get shit done. My last sentence was an homage to Ed Roberts one of the first prominent disability rights leaders in this country. He wrote: "Most psychiatrists and service professionals who work with us tell us that anger is a bad thing...a stage to get over or something that we need to overcome. But anger is a powerful energy. We don't need to suppress or get over our anger, we need to channel it into making change for the greater good. We need to make sure that we don't turn our anger in on ourselves or our loved ones, but focus it on removing obstacles, and making things happen.". Link: http://www.wid.org/about-wid/highlights-from-speeches-by-ed-roberts

I want to make things happen too. To a degree, the ability make things happen has been impaired by the ADA. Yes, the law is on our side. Yes, progress has been made. I suppose what bothers me the most about the ADA celebrations was the lack of anger. The system that supposedly supports people with a disability is designed to wear you down. Life is a fight for survival as one is routinely on the edge of poverty and typically unemployed. We people with a disability need to embrace anger and what Ed Roberts called "cripple power". Screw the system. There are enough cripples in the nation to form a powerful political coalition. A detailed knowledge of disability history would be instructive and makes for a grim read. From this history we could enlighten others and get angry at the same time. Perhaps this could prompt social change. At the present social change is either absent or proceeding at a glacial pace. I for one would like to feel that I am equal to people without a disability before I die. I doubt it will happen but will give it my all.

I am Not the Only Cranky Cripple

I am pleased to see many people with a disability and those familial with disability rights are writing about the short comings of the ADA. I am weary of adding the proviso "Yes, the ADA has been a central reason the physical and social environment is more accessible but..." Screw the but. We people with a disability are subjected to unacceptable abuse. If you doubt this assessment I suggest you read about an experience Liz Henry just had on a San Francisco bus. Link: https://www.rt.com/usa/311132-wheelchaired-woman-bus-san-francisco/ Oh have I heard this before: You should't even be on the bus". It reminds me of the bad days when New York City MTA buses were first equipped with wheelchair lifts. The lifts, thanks in part to the mayor and rags such as the NY Post, people were staunchly opposed to them. I was a bus buddy for the EPVA and vividly recall waiting for a bus on a hot summer day and hearing people on the bus encourage the driver not to deploy the lift. I could hear most passengers chanting "Go, go, go, go...". Fast forward 25 years and the bus drivers in NYC treat me as poorly as any other passenger. Rarely does a bus driver refuse to deploy the lift. I am just a another body getting on and off. 

The above memory was prompted by reading post at Musings of an Angry Black Womyn. She wrote about the very white appearance of the disability rights celebrations. I am the symbolic representation of the movement: white, typical body in many ways, middle aged and using a manual wheelchair. My presence is expected. I am struck by this and the severely limited number of black people present at ADA celebrations. With delight I read the following: 


The face of the ADA, like the face of the disability community and the disability rights movement is White. Of course, those who authored the ADA, as well as the politicians who pushed it forward, along with the disability rights leaders and the one who signed it into law were all White. Fine. I have nothing but the deepest respect for you all. Still, the way the story is told, you'd think Black folks just sat on our duffs and sucked up the benefits of the ADA while White folks and a few Latinos did all the work.

I'm going to tell my version of the narrative, which is every bit as true as the mainstream version. Black folks helped get the ADA passed, too. We didn't write the law, but we put our bodies and lives on the line to get it passed. Even before the first word of the legislation was written, before the first hearing, before anything, 

Black folks were out there fighting for accessible public transportation and accessible public spaces. Black folks fought for the ADA just as hard as White folks. We chained and handcuffed ourselves to buses. We helped shut down buildings and stayed overnight in freezing cold weather. We climbed those 83 steps of the Capitol. We were arrested in the Capitol Rotunda, too, but no one seems to know or remember that. Even today, Black folks continue to put our bodies and lives on the line, but 99% of what you hear and see are White folks.

Am I angry? Jealous? Jaded? You bet! I see all these White folks being lauded and praised, but only a couple of token Blacks appear anywhere. Young White folks who weren't even born when we Black folks were being dragged from our wheelchairs or beat up by cops are being seen as the face of the movement, while Black folks aren't really spoken of unless you're considered respectable. To date, I've only seen three Black folks put forward as leaders in the disability rights movement and one of them has passed away.

Why is it that the face of the ADA, the disability community and the disability rights movement is White? Is it racism? Is it the system of White supremacy? Is it because White is the default condition or experience? I maintain that it's all of the above.

Bravo! Love the mixture of astute observations and anger. Ah, anger. A friend of mine jokes that "Anger gets shit done". All too true. Yet anger directed inward is incredibly destructive. Balancing two types of anger can be very difficult. I for one embrace anger that is directed outward in a painfully polite manner. I do my best to avoid directing anger inward as depression can be lethal. So on this dreary rainy day in Central New York I share the outward anger and musings Of An Angry Black Woman.  

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.