Quad Grips

Many of the people I know with a spinal cord injury have no interest in cure. In fact, I know very few paralyzed people that have even a cursory interest in cure. However, almost every person I know with a  SCI has a far more modest take on paralysis. I cannot tell you how many times I have heard a person with a SCI say "if my level of injury were just a bit lower I could..." I have expressed the same sentiment--especially when I see a paralyzed person with excellent trunk control. Man I would love to have some working abdominal muscles. If I were a T-12 instead of T-3 I swear I would be president of the United Sates and richer than Bill Gates. Joking aside, the difference between a high thorasic injury such as mine and a low thorasic injury does not have a profound impact on lives. Sure life with a lower injury leaves one with more physical ability but it does not have a huge impact on one's life in in the bigger picture. The same cannot be said for cervical SCI injuries. The difference between a quadriplegic with a C-4/5 level of injury and one with a C7/8 injury is immense. A person with a C-4/5 SCI will need much bodily assistance-- help with transfers, dressing, relieving pressure on one's ass to prevent a pressure sore, and other routine aspects of daily life most of us take for granted--myself included.  The killer for quadriplegics is time. Every aspect of their life takes more time.

Let us enter the world of quad grips.  My friend Ruth who posts at Wheelie cAthlic send me a list of items marketed to the quadriplegic market.

1. Quad push gloves cost twice as much or more than weight lifting gloves.
2. Rim foam or vynl covering are hundreds of dollars and electrical tape is equally affective.
3. Quad reachers cost hundreds of dollars.
4. Adaptive eating utensils can be replaced by palm cuff type device.
5. Adaptive computer equipment is vastly over priced.
6. Head rests and lap trays are very costly.
7. Portable "quad hydration" systems are double or triple a camelback device.

I am not expert on quadriplegic equipment. However, I was struck by the number of small companies that exist that attempt to serve the quadriplegic market. Many of these small companies sell very expensive adaptive gear that appear to me to be poorly designed. Here is one such product that retails for about $150.

Another product that appears perfect for a horror or slasher movie.

Here are quad grips designed for handcycling:

The above quad grips all approach $500. Take a look below and tell me this product cannot be adapted to as effective as the $500 grips.

Give me a roll of duct tape, some dry cell foam and I bet in less than an hour I can have a person all set up.

The above are not even the high ticket items associated with life with a cervical SCI. I would love to hear from quadriplegics who have come up with innovative and inexpensive gear. I am especially interested in driving systems. Now that is about as high ticket as one can get.

Happy 23rd Birthday to the ADA: Oh and People with a Disability Still Get Screwed

I am extremely cranky. In fact I think I can safely say I am mad as hell. I have exchanged more emails than I care to think about with regard to the October meeting of the American Society for Bioethics and Humanities today. I gave a paper at the ASBH last year and will do so again in Atlanta this year.  This should be a very simple process but it has been made needlessly difficult. The powers that be at the ASBH have decided the ADA does not exist. Today I wrote the following: 

I would like to point out the ASBH has no information about the ADA on their website. There is no mention of the ADA on the meetings page aside from a cryptic reference to "special needs". There is no point person to contact at the ASBH office. Questions about the ADA are ignored or one is directed to contact the hotel. No information about mass transit, buses, and how to navigate the city are provided. No information about how to navigate the hotel are readily available. No information about access when one is giving a presentation is available. No information is available about access near the Hilton. No mention of interpreters for the deaf or conference materials made available for blind members. All this information is typically provided by comparable professional academic organizations and has been the norm for over a decade.

I concluded my email: 

As a person with a disability I get the not so subtle message I am not just on my own but my mere presence is unwanted. It is as though the ASBH considers the ADA an odorous burden one that is conveniently ignored.  I find great irony in the fact this issue has been brought up today the 23rd anniversary of the ADA. It is my hope the ASBH will some day acknowledge the ADA is important civil rights legislation that they not only comply with but attempt to exceed in an effort to be inclusive to all people. Here is an even wilder idea: in two years the ADA turns 25 years old. Perhaps the meetings theme could be dedicated to disability rights and the ADA. Of course this assumes people with a disability can get in the door and encounter a welcoming environment that has yet to exist at ASBH meetings.

So on the 23rd anniversary of the ADA I have few nice words to express. I will not be doing any celebrating. I will not applaud the passage of the ADA nor will I slap disability rights activists and scholars on the back and say job well done. Instead I will think of the reaction to the Capital steps crawl. For those that have no idea what this was see the following link: http://www.adapt.org/freeourpeople/adapt25/narratives/15adapt.htm   This was a turning point in the lives of people with a disability. More than any single event, this tipped the tide in favor of passing the ADA. And yet at the time the crawl up the steps prompted anger more than support for disability rights among power brokers in Washington. The general public reaction was quite different and disability rights activists were galvanized. 

My thoughts though are grim. I am taken aback by the deeply ingrained ASBH hostility to inclusion and it highlights the limits of the ADA. More generally, I bemoan the fact the ADA has no social mandate. I bemoan the fact conservatives consider the ADA an odorous burden or unfunded Federal Mandate. I bemoan the fact those woefully unaware of the bias people with a disability encounter believe the problem was solved long ago. Afterall those blue wheelchair symbols placards are all over the place. Worse yet I am more fearful today of disability based bias than I was a decade ago. Like many other people with a disability I fear getting sick. I do not fear illness but rather our healthcare system. As I have noted before our health care system considers people with a disability an expensive drain on limited health care dollars. Insurance companies loathe our existence. Health care workers deem us unwanted extra labor. Some physicians want to end our suffering. 

On a day like today I am just mad. Perhaps I am furious. Here we are 23 years post ADA and barriers, social and physical, abound. Most alarming to me is the fact critical care centers, hospitals, are down right dangerous places for people with a disability. I saw this first hand in 2010. Thus I gave a bit of a shudder when I read Tim Gilmer's editorial, "No More Patient" in the most recent issue of New Mobility. I have decidedly mixed views about New Mobility. I will refrain from critiquing New Mobility because my issue is not with what it is but rather what it could be.  I should also note that I have taken Gilmer to task and he has always responded with grace and dignity. But what he wrote this month resonated with me. Gilmer is 68, a quadriplegic and has peripheral artery disease. He had a leg amputated last year. In short he has been through the medical mill like I was in 2010. 

Gilmer's editorial was about his most recent experience in the hospital with a serious leg infection.  He wrote that in six days he met 14 different physicians--an admitting physician, internal medicine physicians, internal medicine residents, a general medicine resident, vascular surgeon, and infection disease physicians. Of the fourteen physicians only four actually examined his leg. Gilmer estimated: "the grand total of medical personnel who proded, poked, and peppered me with the same questions over and over--as if none had taken the time to read my chart notes on any hospital computer, including the one in my room--totaled about 75". Think about this for a minute. 75 people in six days. One hears a lot about patient centered care and I recall reading the Patient Bill of Rights & Responsibilities when I was admitted. I doubt many people read this document. No single Patients Bill of Rights & Responsibilities exists. I have read about a dozen of these documents on line. They essentially state a patient has the right to be involved and direct their care. My question is pretty simple: how do you manage to direct 75 people one will see over a span of less than a week? How does on coordinate communication between 14 physicians in various sub disciplines? The answer is simple: patient care is at best disjointed and when one adds in a complex medical history often associated with disability, ingrained disability bias the result is patient care suffers. Suffer here means care is inadequate, mistakes take place, and hospitals routinely prematurely discharge complex patients. Gilmer wrote:

Two days after I was admitted, Doctor No. 15 cam in and announced I was being taken off IV antibiotics, put on oral meds, and sent home. I was woozy, feverish, leg red and swollen, blood work scary, lying in a pool of diarrhea. I railed, ranted, and recounted my entire medical history in detailed, graphic  examples, explaining to him the finer points of what it meant to be 68, spinal cord injured, with peripheral artery disease--until the color left his face. I guess this changed his mind.     

Gilmer and I were able to assert ourselves. This is great even though the psychic toll such encounters have are exhausting. I will readily admit in 2010 when I was seriously ill my encounter with a hospitalist shattered my confidence and made me wonder if my life had an redeeming value. It was in short a mind fuck of epic proportions.  And here is what keeps me up at night and fuels my anger. I am lucky. I had the ability to so no and say I want to live. Not all people can do this nor are all families as remarkably supportive as mine are. Thus Gilmer's editorial reinforced what I learned from my experience in 2010. Last year I wrote:  Disability, I have rediscovered, is a social malady. My forced dependency in 2010 made me realize the autonomy we Americans place such great value on is based on a very narrow definition. How do we measure autonomy, and more generally, what sort of lives do we value? Do we accept Peter Singer's utilitarian logic or address the literature produced by disability studies scholars who seek to broaden our understanding of life with a body well outside the norm? I would contend we are ill equipped to deal with disability, particularly when people such as myself and others with profound neurological deficits are in need of medical care. My words are way too kind and polite. I think it is fair to say lives are at stake and yet I wasted an entire day trying to educate people at the ASBH about the ADA. Really? 

A Good Idea at What Cost

Since I was ill in 2010 it has become increasingly difficult if not impossible for me to get from the floor back into my wheelchair. This is an important ability since I live alone and the reality is I fall out of my wheelchair. When I do fall I can get back into the wheelchair but it is a time consuming process and extremely difficult. Getting back into my wheelchair after a fall involves crawling to a couch, going from floor to couch, couch to wheelchair without a cushion, then from wheelchair to bed to put cushion under my ass. I do not recommend falling.

The struggle to go from floor to wheelchair is a first and foremost a safety issue. Yet it also infringes upon what I can do. Swimming, camping, and biking become problematic. The problem is as much mental as it is practical. Like many others I embrace an extreme form of independence.  I hate asking for help. I have mellowed a bit as I have aged thanks in large part to participation in adaptive sports.  When skiing for example I need help to get to the lift as well as help getting on and off said lift. There is irony here that I am well aware of.

I have racked my brain for ways to get from floor to wheelchair. Enter the Para Ladder. The Para Ladder is a great idea. I have seen ads and thought this is the perfect solution.  See http://www.paraladder.com/  Check out the photo:

This simple design solves my problem. Not so fast. The Para Ladder is essentially an 11 pound step ladder. It retails at various websites for $700 to $800.

Alternatives exist with slight modifications.  Here is a standard $70 house hold step stool.

Clearly this step stool is not ideal. The Para Ladder is a far better design. But it also costs $700+ I am happy to save over $600 and modify an inexpensive step stool. I can envision many ways to make a step stool work for my needs. If can figure this out I am sure others can as well.

Hoyer Lifts Versus Engine Hoists

Above is a hoyer lift. The hoyer lift also known as the patient lift was invented in 1955 by R.R Stratton. The design of what became known as the hoyer lift has not changed since it was invented. The idea for the hoyer lift was based on automotive repair shops. Engine hoists were widely used as an inexpensive way of lifting an engine out of a car. In fact in the patent Stratton identified the lift as an "automotive engine hoist". Today, hoyer lifts are used in virtually every hospital and nursing home in the country. Many variations of the hoyer lift exist. The legs of the lift are adjustable, a multitude of slings exist, and many are powered by electricity. In a clinical setting two people are supposed to be present when using a hoyer lift to transfer a patient. In the home setting one person can easily operate a hoyer lift.  Many companies manufacture hoyer lifts and multiple videos can be found at You Tube about how they are operated.  Cost depends upon the bells and whistles. Generally, hoyer lifts sell for as little as $1,200 and well in excess of $4,500.  The cost of the lift does not include the sling. Slings cost at least $150. 

It is one thing to state a hoyer lift is similar in design to an engine hoist another to see it.

The hoyer lift is institutional gray. The wheels are slightly larger and some padding has been added. But the mechanics of the design are virtually identical. In fact the engine hoist is far more powerful, that is it can lift more weight, than the hoyer lift. The engine hoist is fire engine red, a color that appeals to me.  Let me ask a simple question: which lift would you want sitting in your bed room? A brand new engine hoist can lift up to a ton. At a tractor supply store the cost would be $205. Used models abound for about $125. 

I would like an answer to a simple question: why is the cost disparity so stark? The design of a hoyer lift and engine hoist have not changed in decades.  A $200 engine hoist can lift a ton. A hoyer lift that can lift a person up to 500 pounds puts one squarely into the $4,500 and up price range. I am not an economist by any stretch of the imagination but this is wrong. And who is getting screwed? Who is being gauged? The most vulnerable among us, people who simply need help transferring.  

Durable Medical Goods Rip Off: A Series of Posts

I am going to start a regular series of posts about how people with a disability are getting screwed over by the cost of durable medical goods. This is an issue that has bothered me for thirty years and thanks to my good friend Rebecca Garden I am going to start to address the cost of being disabled in a series of blog posts. A bit of background is required. Within months of using a wheelchair I quickly came to two conclusions: first, anything remotely associated with disability was obscenely overpriced, uniformly ugly, and poorly designed.  Second, the experts, those charged with prescribing, selling and repairing durable medical goods, were at best incompetent and at worst crooks. For many years I had no choice; Everest & Jennings had a monopoly on the wheelchair market. However in the early 1980s rigid frame wheelchairs were invented. A critical mass of angry wheelchair users alienated by E&J began making and selling rigid frame wheelchairs. Dozens of wheelchair companies popped up and an equal number went out of business. Luckily I found a rigid frame wheelchair and quickly decided to opt out of the system. I have not bought a wheelchair in over 30 years. My only ties to the durable medical goods industry is through my ass. I purchase and replace Roho cushions on a regular basis.

I have a renewed interest in the durable medical goods industry because I am getting older. My wheelchair is indestructible but heavy. I am also not as rough on a wheelchair, and can envision a time when I will need a light-weight wheelchair to preserve my shoulders. I found a wheelchair that I think is revolutionary, a Panthera, made of carbon fiber. It is the lightest practical manual wheelchair manufactured in the world. I tested it and was blown away. It is a revolutionary design. The problem is the Panthera sells for more $10,000.  Put this price tag in perspective: I can buy a good used car for $10,000. 

So how over priced are disability related items you may ask?  I want to start out small. I will discuss mundane items on a wheelchair that will over time break down.  I am operating on the assumption the person replacing parts is somewhat naïve, relatively new to disability, and unaware of alternative (cheaper) resources. The costs I will list are generalizations. I have based my price estimates on different disability related websites. There is a degree of guess work involved. I must stress the following: I am not particularly interested in the details of price variation. Instead, I am looking at the bigger picture of how lives are profoundly impacted by the durable goods industry. The savvy buyer, likely a person paralyzed long ago, will know the industry well and find good bargains. Regardless, the price disparity remains startling.

Wheelchair tires and inner tubes.  At multiple bike stores on line I can order a pair of tires for $13.99.  Inner tubes are $4.95 each. In short for $25 I can buy tires and tubes and get them shipped to my home for free. A person new to paralysis will likely think I need to buy my tires and tubes from the wheelchair manufacturer. Big mistake. Order tires and tubes through Quickie, the dominant wheelchair manufacturer in the USA and one will pay dearly. Tires are $17 each, hence two tires are $34. Inner tubes are $8.  Shipping is not free. So cost went from $25 to over $50.

Paint. Few wheelchairs will ever need to be re-painted because they are not designed to last. So let’s say a person went on a trip and the airline chipped the pretty paint job on your wheelchair in a highly visible place. Quickie will be happy to sell you an ounce, yes one ounce, of touch up paint for $75. I scoured the Quickie website and could not find out how much it would cost to paint a frame. Again, it is my contention wheelchairs produced by Quickie are not designed to last hence there is never a need for a new paint job. In sharp contrast, my wheelchair frame was designed to last a life-time. I had three frames made about 25 years ago. One frame has been retired and the other two are in great shape. Every five years or so my wheelchair frame needs to be repainted as do the rims on my rear wheels and the footrest.  I bring my frame, rims, and footrest to a powder coater and the entire job takes two days and costs $125. More than an ounce of paint is used.

Wheelchair upholstery: I replace my wheelchair upholstery through a car or boat detailer. This costs about $50. The cost of wheelchair upholstery ranges widely from wheelchair manufacturers but one should expect to pay $100 a piece.  A set, back and seat, will cost about $200.

I have begun with the least expensive items and will work my way up the price scale. It is my belief that items deemed durable medical goods will be grossly over priced: the mark up extreme. In the future I will discuss high tickets items such as wheels, manual wheelchairs, lift systems such as hoyer and ceiling tracks, power chairs, portable wheelchair ramps, hand controls, van conversions, beds, home elevators and wheelchair lifts. For each item discussed I will offer an alternative. I will repurpose every day items that one could purchase at a hefty discount. The potential savings are staggering.  I will end with one example to wet the readers appetite. A hoyer lift costs at minimum $1,500 and ranges up to over $4,000.  The slings for a hoyer lift cost over $150. I have a friend whose hoyer lift broke. Insurance would not pay for a new lift. A rider was added to this person’s health insurance coverage and omitted certain durable medical goods. Such riders are now commonplace (my insurance added a rider last year eliminating coverage for organ transplants). My friend could not afford to spend thousands on a new hoyer lift and instead scoured the automotive section on ebay. This person bought a used engine lift for $125 (it was a cool fire engine red). He made his own sling made of a tarp and a cotton sheet for less than $20. It is the best and most reliable lift my friend has ever owned. It cost less than $150.

The NYT Infuriates Me

I read "A Life-or-Death Situation" by Robin Marantz Henig early this morning. It was not a good way to start my day. See http://www.nytimes.com/2013/07/21/magazine/a-life-or-death-situation.html?pagewanted=all&_r=0 In fact it has taken me all day to calm down. Henig's characterization of the life and body of Brooke Hopkins is disturbing and the title of her article is misleading. Brooke Hopkins and his wife Margaret Battin live in Utah and were a typical academic couple until 2008. Their life changed in an instant when Hopkins had a bike accident and became an upper level quadriplegic. Hopkins, recently retired, was a professor of English at the University of Utah. Battin is described as being an "international leader in bioethics" whose work has focused on suffering, suicide, and dignified death.  While never explicitly stated, Hopkins and Battin are supposedly ideal people to discuss end of life issues. Battin has published widely on the matter and her husband is a learned man who post injury is the embodiment of end of life issues (by itself this is misleading). Henig obviously loved the irony involved and used Hopkins and Battin to personalize end of life care. In short, Hopkins and Battin are the perfect hook to lure in readers.

Within a few paragraphs I knew the article would be hopelessly distorted and anti disability. The descriptions of Hopkins body are deeply offensive. The not so subtle sub text is that life with a disability, especially for a vent dependent quad, is filled with pain and suffering. Such a life is terrible for Hopkins and by extension his wife. This point is made with the subtlety of a brick thrown through a plate glass window. Prior to his injury Henig makes it clear that Hopkins was a virile man who traveled the world. He was a larger than life figure and to be rendered a quadriplegic is a fate worse than death and his only saving grace is his powerful intellect. Of course Henig does not express this so bluntly. Instead she peppers her essay with the following:

By the time Battin saw her husband post injury he was "ensnared in the life sustaining machinery he hoped to avoid, the decisions about intervention already had been made".

Henig plays up the irony of Battin's scholarly work and how suddenly "they turned unbearably personal. Alongside her physically ravaged husband, she would watch lofty ideas be trumped by reality--and would discover just how messy, raw and muddled the end of life can be".

In the weeks after Hopkins injury Battin's effort to support self determination in dying was called into question by "her husband, a plugged-in mannequin in the I.C.U., the very embodiment of a right-to-die case study".

Hopkins was "physically devastated but still free" and capable of making a decision "that would cause anguish". The implied choice was death over disability.

A vibrant energetic man prior to injury, "all that energy went absolutely still at the moment of his collision.

Hopkins and Battin lived the life of scholars but they "learned that no mind can fly free if a useless body's incessant needs".

Hopkins, a month before his 71st birthday, "was dressed as usual: a pullover, polyester pants that snap open all the way sown each leg, a diaper and green crocs". 

For Hopkins, "what elevates his life beyond the day-to-ay slog of maintaining it--the vast team effort required to keep his inert sack of a body fed and dressed and clean and functioning--is his continuing ability to teach part time through the University of Utah's adult education program."

"A man who had always taken great joy in preparing, sharing and savoring food decided to give up his final sensory pleasure in order to go on living".  (Hopkins had a feeding tube inserted to avoid aspirating food into his lungs.)

I am truly stunned by the descriptions of Hopkins body. He is a plugged in mannequin whose useless body has incessant needs. A dignified man has been reduced to wearing polyester pants and a diaper. When I read passages such as this in the supposedly venerable New York Times I wonder first what was the editor thinking and secondly it is no wonder people have such a skewed concept of disability. Articles such as Henig's perpetuate an overwhelming negative perception of disability. While I find much of what Henig wrote objectionable what bothers me the most is the lost opportunity. Henig mentions Battin does not shy away from fringe groups who push for "self deliverance" at the end of life. When I read this I wondered does Battin shy away from those opposed to assisted suicide and euthanasia? I have no idea because a group such as Not Dead Yet is not even mentioned. In fact no mention is even made of the serious concerns many have with legalizing assisted suicide.

Henig maintains the core principal in Battin's work is autonomy.  Common sense indicates a competent person should be free to make an autonomous decision about the end of life. In theory this is  logical. However, as I have pointed out many times, we do not live in a world of theories. We live in a flawed world and no human being dies in social isolation. Larger cultural factors exist and profoundly affect how we perceive end of life care. For example, Hopkins was paralyzed much later in life. He had a well established career as did Battin. They have extensive health care insurance and a  learned and detailed discussions about end of life issues is well within their realm of ability. But what about others who live a dramatically different life. What if Hopkins was 22 years old and was a day laborer? What if he had no health insurance, no known family, and lived on a third floor walk up apartment in Brooklyn. Does such a man have the same ability to be as autonomous as Hopkins? I think not. Even from a privileged position Battin and Hopkins struggled. They had excellent health insurance through the university and Medicare. This is great but getting an appropriate wheelchair at the cost of $45,000 was a battle. This says nothing of the fact they spend $250,000 on health care workers. These numbers do not surprise me one iota. What people with no exposure to disability fail to realize is that the best insurance in the world cannot empower people with a disability. And disabled people with health insurance are the lucky ones. Battin and Hopkins embody the failure of the best our health care system offers people with a disability. We people with a disability are in short set up to fail and die.

It is one thing to discuss lofty ideals of autonomy but another to live in a hostile world that deems people with a disability as an economic drain. Battin and Hopkins are lucky--hard to imagine this I know. The man I described above who experiences a SCI injury is screwed. He is doomed to fail despite the fact he enjoys the same civil rights as Hopkins. Who will advocate for him? No one. Maybe a bored social worker will make an effort but the fact is nationwide resources for people with a disability are grossly inadequate.  Talk about patient centered care and autonomy do not mean much when you are a young man facing life in a nursing home. Suicidal thoughts for this man are a logical reaction to an impossible situation. Forget about suicide prevention--his desire to die is logical.

People who advocate for assisted suicide legislation do not want to enter into a discussion about social inequities and a corrupt for profit health insurance industry. Compassion and Choices and other advocacy groups that push for legalizing assisted suicide rely on gruesome end of life stories. As recently noted by Marilyn Golden in the Sacramento Bee, no one wants to discuss Barbara Wagner, Kate Cheney, or Randy Stroup (for those that never heard these names a simple google search is suggested). No one wants to talk about Don Mackay in Australia whose death was tragic. I urge people to read Theresa Mackay's Without Due Care. One could also read Barbara Farlow's work about her daughter Annie who died needlessly. Gripping reading can be found in the work of parents with children and adults with a profound disabilities--these are the most vulnerable and socially isolated individuals in our world. These parents struggle to get adequate care for their children. Abuse is rampant among the profoundly disabled and lead to ethically questionable treatments such as growth attenuation.

I fear my words will fail to resonate. I am preaching to the choir here. The comments that follow Henig's article in the NYT are largely supportive if not effusive in praise. I expected this. Whenever a person with a disability expresses a desire to die the collective response is supportive. People with a disability that express a desire to die are brave. They are heros. Of course you want to die. This is a logical response to disability. Those that want to live are a problem and quickly deemed bitter. I urge people not to be swayed by emotion. Take a hard look at end of life issues, assisted suicide legislation, and how the elderly, terminally ill and people with a disability struggle financially and socially. Put yourself in the position of a person with a disability. What happens when a person with a disability becomes seriously ill? Diagnostic equipment and hospitals rooms are notoriously inaccessible. Worse, disabled bodies require more labor and expensive technology. In a for profit health care system we are an economic drain. But do not stop there. How many families are willing to support a person, an elderly terminally ill parent for instance, until all finances have been spent? The point I am trying to get at is the social pressures are crushing. Some people are forced to decide between health care and a child's tuition payments.  In short, my reaction to  Henig's article is different. I see the ethical conundrums at the end of life as being messy, complex and inherently flawed. Assisted suicide is not the answer. We as human beings can do much better.

On Being Ground Down

A few days ago I wrote that the cultural construction of disability wears down people with a disability. The institutions we create to solve the socially constructed problem of disability do the heavy lifting. The unstated social goal on the part of the normate is to disempower people with a disability. Total institutions work their  magic on vulnerable populations. Secondary schools, universities, rehab centers, group homes and nursing homes all excel at reminding the public at large we people with a disability are different. We are special. We have special needs.  This line of reasoning results in staggeringly high unemployment rates, social isolation, and stigma. This is not accomplished in a day or two or even over a span of months. To really destroy a person with a disability, to ground them down to subservient silence, takes decades. It is a social assault of  small daily violations that over a lifespan can crush a person. It is an insidious process. I rail against disability based social inequities but am far from immune to the glacially slow and destructive results. I am battle scared and deeply flawed as a result. The worst part is the slights and small degradations become the norm. I accept my inferior place without even knowing I have done it. This thought came to me yesterday in the strangest of places--the bathroom at Citifield where the New York Mets play.

Like most baseball fans, I cannot afford to go to more than one or two games a year. Yesterday was cap day and Syracuse Alumni day at Citifield. I attended the game with my son Tom, his half sister, Steve Kuusisto, his in law's, and Ross Connell. I had an awesome time. Thanks to Steve we attended a Syracuse picnic, held next to the Mets bull pen. I even got to meet Mookie Wilson who is in the Mets hall of fame. He and Dwight Gooden were my favorite players in 1986. As we stuffed ourselves with hot dogs and burgers we got to watch the pitchers warm up. Oh the sound a ball makes when thrown  by a major league pitcher into a catcher's mitt. The popping sound is unique and I instantly felt like I was a boy again, carefree my life ahead of me. Navigating through a baseball stadium in a group is not easy. Add in my wheelchair and Steve's impressive guide dog Nira and we are in Steve's estimation a comedy in motion. Wheelchair man and dog man cover a wide swath of space. Anonimity is not possible--Nira is a rock star. I will hand it to each and every employee we encountered at Citified, they were all great. It may be expensive to get in and park the car but it was an overwhelmingly fun day. Why Steve and I even split a filet mignon sandwich at an insane price of  $15. It was worth every penny.

In the land of disability however life is always shall we say interesting. Around the fourth inning nature called. Nira was content and Steve decided to leave her be. Yesterday was hot and all labs struggle in the heat.  Steve and I head off in search of a bathroom. We enter and as always the single stall I can get into was occupied. Steve waits with me. Time ticks by. Then too much time ticks by. I shrug tell Steve welcome to my world. I tell him go ahead I will catch up with you. This wait for me is the norm. I silently think why are drunks and constipated men magnetically attracted to the single stall I can access. Steve is not amused. Steve is pissed. Steve violently bangs on the stall door. I want to crawl into a hole. Banging on the stall door never works. He does not know men will sit on the crapper to spite the door banger and Steve is one hell of a door banger.  Sure enough the unseen half drunk man taking a shit decides now is great time to have a loud telephone call. Honestly you can not make up such a primal scene of sociology. So we wait some more. We hear the flush, pants getting buckled and the cheap stall door opens. Steve rips the door out of the guys hand and loudly, very loudly, bangs against the door. The half drunk guy is pissed off and gives a surly look our way. Steve is leaning in with good position and is ready to pounce. Steve is not a big man but he is barrel chested and strong as a Finnish oxen. A fight is not just possible but less than a second from taking place. Based on Steve's body position I know he has been in a fight. In less than a second the half drunk comes to the same conclusion and quickly backs down and slinks away.

I have thought a lot about what took place in the bathroom. Why was I not furious?  Why was I not confrontational? Was Steve's anger unjustified?  I was torn. Steve and I had every right to be furious. I should have shared his fury. And then I thought this trip to the bathroom perfectly encapsulated how a person with a disability gets worn down over time. Long ago I too would bang on the door. I would be confrontational. Steve made me realize I have lost something important. Being confrontational can work. In fact I think it has a place within disability rights and disability scholarship. Anger Ed Roberts wrote when directed at injustice however small is good. We need more pissed off cripples. These pissed off people get stuff done. Steve gets stuff done. I will too.