I am Not Alone: Bad Cripples Abound!

I have written about the dichotomy between being a good cripple and bad cripple. Briefly, a good cripple is always cheery. A good cripple never gets mad and is always appreciative. A good cripple loves to educate the general public. A good cripple never questions why access is absent or inconvenient. A good cripple does not assert his or her rights. A good cripple is compliant and chipper. A good cripple is, well, sort of like my like my labrador Kate who oozes happiness. 

I am not a good cripple. I am bad, a bad cripple. I have a boat load of angry emails telling me exactly how bad and bitter I am.  I  also am subjected to nasty comments on a regular basis when I assert my civil rights.  You see I am not a doormat. I do not like it when people think I am physically and cognitively disabled. I can read a menu thank you very much. I can get in and out of my car all by myself. This is not "amazing" and I dislike being stared at when I doing I am in the process of transferring in and out of the car (kids who watch me get a free pass--they are just curious). I am insulted when a stranger accosts me and tells me "I would rather be dead than paralyzed". Gee thanks for sharing. I resent when I go out to eat that I am seated in the back at the worst possible table. I refer to this as the cripple table. I get angry when bus lifts and elevators are broken for weeks at a time. I have no hesitation asserting my rights when airline employees are determined are point blank rude.

I am not alone. We bad cripples are multiplying at an astonishing rate. Why we bad cripples even marry, divorce, and have children. And yes, I have brain washed my son into thinking I share the same civil rights as the bipedal hordes that populate the country. Don't call child protective services. It is too late he is an adult. Be forewarned there are others like me. Mike Ervin who writes at Smart Ass Cripple is one sarcastic son of a bitch who makes me laugh on a regular basis. And I discovered another bad cripple today. Good God it is an epidemic!  Lock up the children. Check in on Grandma and Grandpa. Lock down the schools. We are breeding! Sex? Oh no, you bad cripples are not just bad but sexual beings. Yuck, that's gross. For the record I have had sex once. I did so because I wanted a son. I promise I did not enjoy it. All sexual thoughts have been expunged from my mind. 

So who is this bad person I discovered? She is Andrea Chandler. A crippled Quaker. Try saying that fast ten times. She is married too. And she has pets! Wow, she is amazing! Pets, yikes she can do it all. Chandler wrote a gust post at Feminist Sonar hosted by Elas E. Sjunneson-Henry. And yes Sjunneson-Henry is bad too. She might even be badder than me! She is a disability studies scholar and activist and burlesque historian. Come on break out the strippers. And to think I thought my interest in body art and modification was different. Back to Chandler. She wrote a great post in April titled "The Dog & Cripple Show is NOT Open for Business". See http://feministsonar.com/2013/04/the-dog-cripple-show-is-not-open-for-business/ In part this is what Chandler wrote: 

Gentle readers, I was not a cheery and inspiring ray of sunshine before I became disabled. Why would I become one now? Not that I have any particular animus for the Good Cripples among us merely for being Good Cripples. You do you, brothers and sisters. What raises my blood pressure every time is when people try to lecture me (or another angry cripple) about why we, too, should be Good Cripples.
These evangelists never, ever suggest that maybe non-disabled people should get a fucking grip on their curiosity, exercise some self control, and not ask for in-depth details on how crippled bodies work. The evangelists never point out that any non-disabled human being over the age of 5 has learned that sometimes you don’t get your curiosity satisfied, you don’t get to touch something just because you want to, and that some questions are rude. No, these people just make constant demands for people with disabilities to turn themselves into traveling teachable moments, as if we have no right to boundaries, to privacy. As if we have no right to decide who can touch us when, or what information we want to share with total strangers.This is, not to put too fine a point on it, bullshit. When it’s another crip telling me to stop being a bad cripple, it’s depressing bullshit. There are millions of people with disabilities in the world, which means there are millions of ways of being disabled, all of them valid. What works for me, or for you, does not necessarily work for anyone else. Our bodies and lives are too different. If you want to be a Good Cripple, knock yourself out. We all have the right to decide when, where, and who we will educate, and how much information we will share while doing so. Being disabled does not magically negate my basic human right to decide these things. Being crippled does not put anyone under an obligation to lay themselves bare for the idle curiosity of strangers.

Asserting your right to boundaries, to be addressed politely, to not answer questions about your body, demanding that others treat you with basic respect for your humanity, none of these things makes you a bad person or a bad cripple. Being happy to stop and educate every single person who wants to quiz you doesn’t make you a bad person, either. But when you evangelize, when you lecture me and wag your finger about how awful I am that I just want to run my errands and get home without it becoming a two hour dog-and-cripple show, well. That, gentle readers, makes you an asshole.

I want to make it clear here and now I have never called anyone an asshole on this blog. I will confess the thought has crossed my mind more than once but I have refrained from putting this in writing.  These are heady days for me since I asserted that I am not a bitter man. Why some kind readers even felt compelled to tell me it is okay to be bitter. I cannot and will not embrace the mantle of bitterness. I am content to be angry. I am content to assert my civil rights even if most bipedal people have no clue civil rights and disability rights are one in the same. I am not bothered when I am angrily told I have a chip on my shoulder. I will confess though I do not like it when I am called a "fucking asshole". I guess not everyone loves me. This week it was amply demonstrated I am not alone. In the future hordes of bad and bitter cripples will create a social revolution. Ramps and accessible buses will abound. Every house from coast to coast will be modified. We will out law steps and require every American to learn and become fluent in ASL (American Sign Language). Obviously this makes bad bitter cripples communists--bi-lingual education is communistic; J. Edgar Hoover said so. We will also revolutionize health care and, gasp, endorse a nationalized health care system. This puts us on double super probation with the FBI. We will even require taxis to be accessible much to the horror of Mayor Bloomberg. We will advocate pot be made legal too in a nod to our hippie past. Why there is no end to the evil will create. You bipedal people have been warned! 

Bitterness: A Flawed Concept

In recent months I have noted an increase in the number of people that deem me bitter. People with a disability and people without a disability have levied this charge. I find this extremely frustrating and proof positive I have failed. My words, often pointed, have been misunderstood. This failure is particularly troublesome because it has been consistent; thus I have consistently failed to make myself clear. I was up late last night thinking about why; why have I been characterized as bitter? It is the last word that I would use to describe myself. I am extremely content with my life. I am content with my aging body. Life, I am happy to report, is good. Almost too good in fact. So as I puttered around my house I did what I often do when perplexed. I reorganized my books and came to the conclusion the charge I am bitter rests upon two important variables. First a simplistic understanding of disability and secondly the utter failure to consider disability rights to be equivalent to civil rights.  

The above small epiphany came to me when I came across Simi Linton's important book Claiming Disability. I know Linton's work well but it was the foreward to her book by Michael Berube that hit home last night. Berube Wrote:  "If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities”. And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy."   The key words here are "shapes public life and public policy."  Disability does not exist in splendid social isolation. Disability is about much more than a given physical or cognitive deficit. Disability is not about a personal reaction to a disease or impairment. Disability is a social problem--an observation I have made many times. But this is not what the public at large sees. The public's understanding of disability is too often based on ignorance, assumed or unrecognized bias, and discriminatory social policies. We people with a disability are too often out of sight and out of mind. Our physical and social environment is not constructed to be inclusive. Yes, lip service is paid to the ADA and it is begrudgingly followed. In reality, few people without a disability give a damn about the disabled. Our lives are not valued. Our existence is deemed a costly burden (think Peter Singer). Add in a healthy dose of fear, we are the only minority group one can join in an instant, and the social reaction to the presence  of a person with a disability is too often toxic. This skewed social response is called ableism, a concept I am very familiar with. Ableism, as described on the blog Bastard: Musing of Yet Another Bitter Cripple, is "the set of social practices that I am met with when I venture outside the door of my home. It is not something most people would admit they adhere to, it is much more subtle than that. I am automatically met with a number of assumptions – very often unconscious ones – that lead to me being treated in a way different from everyone else. And the kicker here is that these assumptions are based both on my actual disability as well as presumptions about my disability that only live in their head. See: http://disabilityrightsbastard.wordpress.com/2013/04/23/ableism-and-internalized-ableism/ 

The penchant to classify people with a disability as bitter has and will continue to be levied. Nothing will change until ableism is acknowledged to exist. As of today, this concept is virtually unknown. It is simply not taught. When I have tried to use the word people look at me with a puzzled expression. When I use the word ableism and see the veritable light bulb go off in the minds of others I will know the social revolution I have dreamed of has taken place. This leads me to my second and final point. Few people understand or frame disability in terms of civil rights. At times when I link disability rights and civil rights some people will roll their eyes and think this is political correctness run amuck. When I compare disability rights with racial intolerance or women's rights some people react angrily. More than once I have been told framing disability in a civil rights framework is "utter bull shit". It is very hard to find a constructive way to respond to such an emotional reaction. Again, last night I wondered why; Why do people have such a knee jerk reaction? It dawned on me we associate civil rights with classes or groups of people that share a common bond. That bond is called identity. As an anthropologist I know a lot about identity. It is a concept central to the field. I have written about identity in various posts over the last few years. In September 2011 in a post entitled Identity and Disability I wrote identity: 

is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability. 

The concepts I have discussed are as subtle as they are complex. It takes much thought and requires one to dismiss or disregard most if not all of what has been assumed or learned that pertains to the lives of people with a disability. Thus when I point out a given access failure or discuss the down side to feel good stories about disability I am quickly labeled bitter. When I question why an elevator has been broken for six months I am bitter. When I point out a bus with a broken lift cannot by law be put into service I am bitter. When I question why a school district transports every child with a disability to and from school in a single short bus I am bitter. When I point out my rights as a passenger on a plane or train violate federal law I am bitter. But really think about it. What am I bitter about? Not one thing. I do however feel one primal emotion: anger.  I do not rant and rave. I rarely lose my temper. I am exceedingly polite in fact. I use my anger in a calm and reasoned way. I often note that it has been over twenty years since the ADA was enacted and yet civil rights violations abound as do needless physical barriers. I think twenty-three years is more than enough time to correct the social and physical barriers that exist. This line of reasoning makes people very uncomfortable.  Instead of addressing the problem, either social or physical, it is far easier to rely on a knee jerk and antiquated notion of disability.  You are bitter. Your bitterness is the problem. Not verbalized is the belief equal access is a choice. A kindness. I am not grateful for the largesse of society and that I am literally biting the hand that feeds me. Um, sorry but no. I have the share the same civil rights of every bipedal or typical American. I am pointing out that various long standing federal laws are being broken. I can assure you bitterness does not figure into the equation.  

Perspective Helps

Yesterday I was miserable. Today is much better. Not normal but close to it (or what passes for normal when one is paralyzed). Regardless, I take the New York Times to task when it comes to disability rights and for good reason. But once in a while the NYT hits a veritable home run. Yesterday was one of those days. The below editorial was in the NYT yesterday June 1. I have taken the liberty of quoting it in full below. 

A United Nations report, “The State of the World’s Children,”underscores the moral bankruptcy of Senate Republicans who blocked ratification of a treaty to help disabled people around the world. There is scant data on how many children have such disabilities or how their lives are affected. One outdated estimate is that some 93 million children, one in 20 of those 14 or younger, live with a moderate or severe disability of some kind. The issue is how they might be helped to overcome their disabilities and become productive members of their societies.

Today's Editorials

• Editorial: A Failure to Police Chemical Plants (June 2, 2013)

• Editorial: Restoring the Vote in Virginia (June 2, 2013)

• Editorial | Notebook: After Years of Progress, a Setback in Saving the Wolf (June 2, 2013)

• Editorial | Notebook: ‘Hamlet’ Meets ‘The Hangover’ (June 2, 2013)

A United Nations convention would ban discrimination against persons with disabilities and accord them the same rights as those without disabilities. It has been ratified by 127 countries and the European Union. President Obama has signed it, but, in December, the Senate, though supporting the convention by a hefty 61 to 38, fell five votes short of the two-thirds majority needed for ratification.

This was mostly because Senate Republicans caved in to far-right ideologues who contended, erroneously, that the convention would infringe on American sovereignty, usher in socialism, and allow United Nations bureaucrats to prohibit home-schooling or wrench disabled children from their parents’ arms.

The new United Nations report finds that children with disabilities are the least likely to receive health care or go to school and are among the most vulnerable to violence, abuse and neglect, especially if they are hidden away in institutions because of social stigma or parental inability to raise them.

The disabled children and their communities would benefit if the children were accommodated in schools, workplaces, vocational training, transportation and local rehabilitation programs — and if all countries ratified the convention and a related convention on the rights of children.

A Bad Day: Suggestions Welcome

Last night or early this morning depending on one's perception of time my atypical paralyzed body began misbehaving. This is the worst my body has felt in over twenty years. Like many people with a spinal cord injury, I experience, mild, moderate, and severe spasms. The variation in my spasticity ranges wildly and my legs always have a lot of tone. Over time I have learned to adapt and use my spasticity. I also know what makes my spasticity increase or decrease. Cold, think icy temperatures, and movement help the most. I am most comfortable outdoors moving in the cold. Skiing is awesome as is any outdoor activity such as hiking or kayaking. At the opposite side of spectrum heat and a lack of movement sharply increase my tone and spasticity. Regardless of the day I need to move. I cannot be sedentary for too long. This is not good for an academic but as I wrote I have adapted.

Today has been bad and I am truly miserable. For the last seven or eight hours my right hip where my wound was is on fire. Obviously I checked my skin; it is fine. My legs are in near total spasm.  My feet are arched up at a strange angle. I have severe rolling spasms in my torso. They run up and down my stomach in waves--nonstop waves since about 3:30AM. It is creepy to watch my stomach. It reminds me of when my wife was near to giving birth to my son. Her entire belly could change shape. I truly hate the sensation and spasms in my stomach. I cannot eat or drink without feeling sick. At this point I am very sore. My back hurts because I cannot sit normally. Muscles that are not normally taxed are being taxed in the extreme. My over developed lats are tight as a drum. I tried all the little tricks paralyzed people learn over time to decrease my spasms. I took an ice cold bath. Did not work. I took a very cold shower. Did not work. I went for a walk with Kate over bumpy terrain. Did not work. I pushed over grass and through an outdoor sprinkler. Did not work. I cannot drink alcohol because it is too hot and will only make me feel sick. I put cold ice wrapped towels on and off my legs. Did not work. Forget medication. I took baclofen for years--the go to drug for spasticity. I am not sure which was more trouble--spasticity or baclofen. Most other medications for spasms are largely ineffectual. I should amend that statement; most legal medications are ineffectual. Pot as many people can attest has a profound impact on spasticity. My legs turn to butter if I smoke pot. It is really amazing the instant impact pot has on spasms. The problem is pot is not legal in New York. I will not break the law. With my luck I will light up a joint (as if I could find one) and the local cops will drive by. The world has little sympathy for middle aged white men in suburbia who smoke dope. I cannot and will not take the risk. I support the effort to legalize pot but that is another story entirely.

Here I sit in a weird situation that demonstrates what we know about neurology, specifically spasticity, can fit into a thimble. How can one create a drug for spasticity when it ranges wildly from person to person. Spasms are unpredictable and today have pretty much precluded me from getting anything done.  I have modest wishes now--I just want the stomach spasms to lessen. They bother me and can even make breathing uncomfortable if they extend up to the peak of my level of paralysis. This has happened a few times in the last few hours. In short, I am a mess. Spasms suck. Yup, that is my Ivy League PhD level of analysis. Spasms suck. So anyone with any ideas, legal ideas, I am all ears.

I do have one idea. A big walk in freezer might help relieve my spasms. This raises my level of desperation to a new level and creates a strange possible social dynamic.  Can you imagine this? I walk into BJs or Costco and ask to see the manager. Some poor over worked guy will ask what can I do for you. So there I am in shorts and a t-shirt. Can I go into your walk in freezer for an hour or so to relieve my spasticity? I am not sure what the reaction would be but I would wager my request would be a first.

How Far Does Being Nice Get You?

The answer to the title of this post is not far. Why do you have to be such a hard ass all the time is a common question posed by people who read my blog. Recently I have been getting a lot of this type of email and similar comments on various posts. I struggle to answer this question. The why are you a hard ass question I get. I am a hard ass in many ways and I do my best to respond. Those readers who angrily maintain I am a bitter asshole are just wrong. The people that level this charge utterly miss the point of my writing. I suspect I am deemed a bitter asshole because I do not aspire to be "normal". I also have nothing nice to say about the cure industry.  My lack of interest in normality and cure makes me persona non grata in the estimation of some. As to anger, I plead guilty. I am angry 35 years post injury. My anger has not one thing to do with my body.  My anger is not directed at any single individual or biased organization. I direct my anger outward in a healthy and what I hope is a constructive manner. I am angered by injustice, social and economic inequity, and the violation of civil rights. I am angry people with a disability twenty plus years after the ADA still encounter needless social and attitudinal barriers. My anger is never about me. My anger is designed to do one thing: prompt social change in terms of disability rights so the next person with a disability does not experience the same level of discrimination I did. Like Ed Roberts, I see nothing wrong with anger. When channeled in an appropriate direction anger can change the fabric of society. Look what MADD (Mothers Against Drunk Driving) has accomplished, a movement that was started by angry mothers whose children tragically died. Within disability rights a few angry activists in Denver spawned a national movement to get lifts on buses. Fast forward to today: I easily (albeit slowly) board a bus and navigate New York City. A few angry activists in Denver are responsible for sweeping change that has benefited millions of people nationwide.

Readers who think I could be nicer have a point. I suppose it is possible to be too cranky. So in an effort to be not such a bad cripple I will write something nice.  Over the last two years or so I have occasionally seen the name of a paralyzed woman Carolyn Pioro. Ms. Pioro was a circus performer and competitive athlete until she fell from a flying trapeze and experienced a spinal cord injury. She is a quadriplegic. When I read about Pioro, it was usually with reference to fashion. As someone with a body that is extremely crooked finding clothes that do not need tailoring is not easy. Hence I look at clothing websites that are designed for people with a disability. My search has not as yet resulted in any good finds. But I did come across Pioro's name who struck me as a smart woman. Ms. Piorio is an attractive and fashionable young woman who seems to have a great sense of style post injury. I know nothing about fashion though I suspect it is difficult for women to find fashionable wheelchair appropriate clothing Regardless, this is where my knowledge of Pioro began and ended until yesterday. 

At Bloom, an interesting website about disability, had a short post about Pioro on May 27 (http://bloom-parentingkidswithdisabilities.blogspot.com/2013/05/i-have-to-let-go-of-my-past.html ). Ms. Pioro is giving a talk in Toronto June 6. The title of Pioro's talk is "I Have to Let Go of My Past". This notice led me to read an excellent essay by Pioro in Chatelaine (http://www.chatelaine.com/living/real-life-stories/carolyn-pioro-on-life-after-a-devastating-spinal-cord-accident/). Pioro gives a gripping account of her accident in 2005. What struck me was not the circumstances of her injury but her reaction to it. In a section entitled Enforced Isolation Pioro wrote after her injury:

I had very few visitors during my two months in intensive care. I kept it that way on purpose. I knew that I wasn’t going to beat this paralysis thing, that I just needed my condition as a quadriplegic to stabilize before I could move on to whatever was next. I allowed only my mom, dad, brother and soon-to-be-sister-in-law and two close friends from the restaurant I had been working at to come see me, and what they saw looked pretty grim.

Pioro went on to note she permitted only six visitors:

Those six amazing people from my innermost circle came to see me, bringing comfort and normalcy with each visit. My dad would read me the newspaper; my mom applied hand lotion, as the rough calluses I had built up were beginning to disappear. My most loyal friend from work, David, would come in twice a day and talk about the goings-on at the restaurant and really just anything, even something as trivial as his neighbour stealing his garbage bins. Since the breathing tube still made it impossible to speak, having someone to listen to, someone to sit beside me, was exactly what I needed.

To me, this is a perfectly logical way to handle a sudden paralyzing injury. Establish medical stability. Allow precious few people to visit while hospitalized and as the body heals consider how one can move forward. There was no talk of cure or suicide. She was forward thinking at a time of great stress and angst. And Pioro did what I did as do the vast majority of people who experience a devastating spinal cord injury. She worked hard and learned. She learned how to direct her care. She learned how to instruct people to do mundane things such as dress her, clean her body, brush her teeth and manage her bowel and bladder routine. She learned how to use a head controlled wheelchair. None of this is easy and like countless others realized what it is like to live with a life long disability. Unlike in the United States, Pioro received extensive rehabilitation (eight months). She was I assume well prepared for life with a spinal cord injury. Reality hit home ten months after her injury. She moved into an assisted living residence. This sounds nice. It was not. She wrote:

in reality, a sketchy high-rise building — plagued with violence, drug dealing, bedbugs and cockroaches. There I received 24-hour assistance from a staff of personal-support workers. I met a handful of remarkable women who really did ‘get’ the job and were genuinely helpful. Unfortunately, they were not the norm. The rest treated my apartment solely as their workplace and me as an inconvenience that got in the way of their watching The View.
One morning I asked to put on a crisp white shirt that had little hooks and eyes and a skirt with a long double zipper. My attendant mumbled under her breath the entire time she helped me and afterwards asked, “What are you getting so dressed up for anyway? It’s not like you have a date.” Later, she filed a complaint stating that my clothing had too many hooks, clasps and time-consuming accessories. Staff members were afraid of straining or spraining their hands and wrists while assisting me. I’m not sure what made me feel worse: the dig about dating or the fact that someone whose role it was to act as my hands would carry out her job in such a hurtful way. I was left feeling crumpled. Being someone who loved fashion, I saw my life heading into an abyss of yoga pants, sweatshirts and Crocs.

Welcome to the world of disability. What a shock this is; not one's disability but the social and practical reaction to it. This is a staggering fall in terms of how others value your existence. It can be and is too often a crushing experience. An untold number of lives have been destroyed. It takes great inner strength and depth of character to know others, in some cases highly educated others, believe your life has no value. Worse, your existence is an economic drain on the system and people that experience such a devastating injury should die. Paging Peter Singer. 

The best part of the essay was the closing section, Hope By Degrees. 

What hope is there for me and the estimated 86,000 Canadians living with a spinal cord injury? Medical advancements are being made, but there’s still so far to go. I would be lying if I told you I’m not gutted by the fact that my dad is never going to walk me down the aisle; I’ll never hold a niece or nephew or measure my hand against my mom’s as we used to do. Would I trade my human soul for working cyborg parts? In a mechanical heartbeat, yes. I've lost a lot of friends since the accident, certainly not because they’re cruel and unkind, but our lives are just so very different now. I’m often asked — rather incredulously — how it is that I wish to succeed in digital journalism and publishing, yet I don’t even have a Facebook account. Although I think Facebook is an incredibly useful tool for all facets of media, for me personally it’s not a good fit. How best to describe what it’s like lurking on Facebook? It feels as though my lungs are slowly filling with warm water, and I’m drowning. I’m reminded  of how old friends and ex-boyfriends are travelling, getting married, having babies and living out their lives in ways I had assumed I would. To stay afloat and to have a future, I have to let go of my past. 
For me, it’s not going to get better, but it will get easier. I’m still as reluctant to write... You see, when there’s just one thing and one thing only that you can do to make your mark in the world and create a career, it can be deadly scary. But I’ll continue working, editing and, yes, even writing. I will strive to make my voice as strong as my body once was.

I deeply regret the fact I will not be able to attend Pioro's talk. For me, 35 years post injury it brings me great joy that people like Pioro get it. Getting it means life before and after spinal cord injury is radically different. Life is not better or worse but rather just a continuum of expereinces. One could compare a spinal cord injury to other life changing events: marriage, becoming a parent, getting divorced, or death. All are life altering events that require to some degree a complete and radical reinvention of the self (I use self in a Goffmanesque way).  For those that experience a spinal cord injury, the reinvention process after injury is highly visible and accompanied by a stigmatized identity. It is not the disability itself that is a shock to the system but rather the social response to a paralyzed body. I failed to understand the stigma associated with disability in 1978. I fail to understand stigma in 2013. Forty years of progressive legislation and social advancement and I still find myself educating people about disability. Some days I am inspired to change the world one person at a time. Other days, an ordinary day like today, I will not leave my home because I simply cannot face the a hostile world. Thankfully these bad days are rare and my labrador Kate is thrilled to have me all to her own. 

I Struck a Chord: Inaccessible Doctor Offices Part II

Wow, my last post really struck a chord. I have gotten dozens of emails from people who have experienced a multitude of problems accessing the health care system in general and physician offices in particular. These emails have made me retrospective. Is accessing the health care system really that problematic? The short answer is yes. At issue though has progress been made? Again, the short answer is yes. This yes is conditional. Physically barriers, though plentiful, are not as bad as they once were. As a kid I spent much of my childhood in the famed Columbia University Babies Hospital. There were steps to enter the hospital. To access Babies hospital my parents and I would go into the medical center via the emergency room on 168th and Broadway. This could be an eventful at any time and for a naive boy from suburbia I got a real education in diversity going through the ER. Today, Babies Hospital is very accessible and the patient rooms on the neurological floor are nothing short of wonderful. Times have changed drmatically. What has not changed is the cultural response to disability. Disability remains deeply stigmatizing.

I looked at the New York Times article again this morning. The number of comments has nearly doubled and there continues to a gross lack of understanding. People just do not get disability. Disability is first and foremost a social problem that is accompanied by unique medical concerns. Discrimination is very real. Discrimination within the health care system is rampant. If the emails I received are any indication, people with a disability routinely encounter blatant discrimination. The emails I received prompted me to wonder down memory lane. Two thoughts dominated my retrospective thoughts: first, I encountered gross bias as a parent with a disability when accessing health care in an emergency setting for my son. While my son's pediatrician was wonderful, ER staff were routinely hostile at every hospital I entered. Virtually every time I took my so to the ER I encountered outright hostility. My ability to parent my son was openly questioned by one and all. I still seethe over this and am comforted by the fact parents with a SCI report such hostility is out of the norm. Bias exists but it is not as direct as what I experienced. Instead of questioning a parent with a disability directly it is not uncommon for an ER physician to contact the child's pediatrician. This call is made to insure parental competency not inquire about the health of the child. Second, I encountered multiple forms of discrimination when accessing routine health care. When my son was small I spilled a small pot of boiling water on my lap. I had first and second degree burns on my thighs. ER care was excellent but I had a great deal of trouble with my follow up care. Given the importance of skin integrity, I was told to see a top notch physician who specialized in burn treatment. I tried to make an appointment but was refused. I was told the physician does not see paralyzed people. This out right refusal to treat a person with a disability is no uncommon. 

I am sure a skeptic would argue that I am exaggerating. Really, how bad can it be?  Let me provide a few examples. 

I had to get a urine analysis and culture done. A mundane test. I was told to go to a lab near my home. Knowing most labs are not accessible I called about wheelchair access. The four labs closest to my home were not accessible. It took multiple phone calls and about half a day on hold to get this information. I eventually found an accessible lab 25 miles from my house (the closest non accessible lab was two miles away). While I could enter the building to this lab the bathroom was not accessible. I had to exit the building, find an obscure location to urinate in a sterile cup. 

I saw my internist recently. He ordered blood tests. I went to the lab in the same building as his office. I waited like anyone else in a cramped waiting room. After a short wait I was escorted to the treatment area.  It was clear every little booth occupied by a lab tech was not accessible. A major discussion ensued. I could have my blood drawn in the hallway or wait until an accessible treatment room was found. My blood was drawn in a hallway with people passing by. 

The two examples above indicate the range of discrimination--it could be a physical barrier or a physician that simply refuses to see paralyzed people. My problems accessing health care are relatively minor in comparison to people with a higher level SCI. Quadriplegics in my estimation encounter the most problems. Those that use a power wheelchair take up a lot of space and cannot slip though narrow doorways like I can. Quadriplegics need help with things like dressing and transfers. This makes the most basic of tests highly problematic. One story related to me by Theresa Mackay (an Australian) about her husband Dan is indicative of the sort of experience quadriplegics encounter. Mackay wrote that Dan needed an IVP. This is a simple procedure. But things are not so simple when it it is not possible to independently transfer from a wheelchair. Dan contacted the facility where the test had been done before and noted he was a quadriplegic. He was told to call another facility because he could not be accommodated. Again he explained he was a quadriplegic and was told if he brought a "carer" he could be accommodated. Dan also spoke to the radiologist and was assured he would not encounter any problems. He explained that his wife could lift his legs but could not transfer him by herself. Again, he was assured that a bed could be lowered and he could be transferred. Mackay wrote that on the day of the test

We were shown into the room for the IVP. After a while we were told that they would not be able to lift my husband. Don explained that he had been told it would be okay by the Radiologist. The two people speaking to us appeared not to believe Don.

 I know for sure exactly what the conversations he had on the phone were as he uses a “Hands Free” phone and I heard both sides of the call he made. They went outside the room and we were left again. They returned and reinforced their stand that they could not lift. Much of the conversation took place with one of them talking to Don from behind his head, where he couldn’t see her. Finally he asked her to please stand in front of him so he could speak to both of them together.

 All the time this was happening we were made to feel very uncomfortable as if somehow it was all our fault. We were told we would have to leave, and make another booking at the Base Hospital. Don suggested as it was their mistake that it would be easier to ask someone to come in to help lift from one of the other branches, a couple of minutes away. He was told that that would be taking them away from what they were doing.

We said that we would not be leaving the room till the IVP was completed. They went outside again.

 Left in the room for some time, finally we called an acquaintance and her husband and asked could they please help us out. This they did and finally Don was lifted to the table, with not one finger of help from Radiology staff, who stood back and watched.

 We had to do this in reverse when the IVP was completed, which entailed phoning up the lady and her son, as she had had to drive her husband to work in the meantime. Again not one finger was lifted to help us at all and no body seemed to have a clue what to do... My husband was patronised dreadfully. I was very angry with the demeaning treatment of my husband.

I can readily envision this incident taking place in virtually any country or in any hospital in the industrialized world. Like Therese Mackay, this incident angers me. I am angry because it was needlessly dehumanizing.  I am not sure when or if the situation will improve. We are now 23 years post ADA and as I have stated many times the social mandate to enforce the law is absent. Part of the Affordable Care Act will require new diagnostic equipment be made accessible to people with physical disabilities. On paper this is a great idea--especially since the American population is rapidly aging. The reality I suspect will be very different. If the ADA is any guide, hospitals and health care facilities will go out of their way to avoid compliance. Thus the solution is not to be found with more legislation or more laws. The solution revolves around building a strong political coalition of people with a disability. This coalition must connect with other political groups and advocate for inclusion from a position of power. Until this happens incidents that were related to me will remain all too common. And I for one find this unacceptable.

New York Times MIsses the Point Yet Again: Inaccessible Doctor Offices

The New York Times published an article, “Disability and Discrimination at the Doctor’s Office” as part of its “Doctor and Patient section by Pauline W. Chen. See: http://well.blogs.nytimes.com/2013/05/23/disability-and-discrimination-at-the-doctors-office/ The article broke no new ground. It is in fact an emotional rehash of an article published recently in the Annals of Internal Medicine. Here I refer to “Access to Subspecialty Care for Patients with Mobility Impairment: A Survey”.  The authors of this study concluded what pretty much every person that uses a wheelchair already knows: doctors offices are not accessible. In the dry vernacular of a medical journal:  “Many subspecialists could not accommodate a patient with mobility impairment because they could not transfer the patient to an examination table. Better awareness among providers about the requirements of the Americans with Disabilities Act and the standards of care for patients in wheelchairs is needed.

As I noted, not exactly ground breaking news. Not surprisingly women that use a wheelchair encounter the most difficulties (I consider women who use a wheelchair a minority within a minority as we men out number them by a wide margin). The article in the Annals of Internal Medicine found 44% of gynecology offices were not accessible. Other findings include the following: 22% reported a patient using a wheelchair could not be accommodated; 4% reported the building used was not accessible; 18% reported transferring a patient were not possible; 9% reported there were no accessible examination tables or an lift. The reality is less than 10% of physician offices are accessible. The vast majority of offices are accessible in name only. Yes, you can get in the door but that is where access begins and ends (bathrooms are hard to find as well). In the words of Lisa I. Iezzoni, MD, director of the Mongan Institute for Health Policy at Massachusetts General Hospital in Boston “Health care is really one of the last bastions of this kind of discrimination”. Iezzoni also stated “Its curious because we are talking about health care”.

The great difficulty people with a disability encounter in their efforts to access health care is not curious at all. It is blatant discrimination. We are deemed an economic drain by for profit health insurance companies. Doctors perceive us as time consuming patients with lengthy medical histories. Staff considers us extra labor. Culturally, we are stigmatized: symbolically we represent the limits of medical science. If you doubt me, I suggest you use a wheelchair and see the sort of sideways glances one gets from people in the waiting room. It is an exceedingly uncomfortable environment. In fact I would describe the typical medical office a hostile social environment. And here is where the New York Times article was fascinating. It was not the content of the article but the multitude of comments that followed that illustrated how poorly understood disability is. The comments graphically reveal a stunning level of ignorance. Ignorance here refers to the fact almost every comment failed to understand the issue is flagrant civil rights violations.     

Here a sampling of comments

Hospitals might consider providing an ADA accessible clinic treatment area and allowing physicians to rent it for use by patients who need this type of facility. Booking time could be done by co-opting OR time blocking software/tools.

Doctors as most people are turned off by disabled, obese and unattractive people.

I think most people, even those in the medical profession (sometimes especially those in the medical profession) are traumatized by their frightening but limited exposure to the lives of people with disabilities. 
I think that professionals may sometimes know a great deal about "disability"; enough to be afraid, but they don't personally know anyone who has a severe disability very well and are kind of freaked out by the whole thing.

Everyone deserves to have access to appropriate quality health care. But who is going to pay for the office remodels and additional equipment? I can't see either Medicare or private insurers doing this. I feel fortunate that our healthcare organization is willing to make the investment in special exam tables, lifts, slings, etc, as well as the training needed to use these items safely. But I can't see physicians who work outside of big multispeciality groups or healthcare systems being able to do this without help.

OK, let's add this to the list of 10,000 other unfunded mandates that physicians struggle to comply with.

If all medical providers were required to have weight-adjustable units or elevators for the disabled, their costs would rise and they would have to charge more. So everyone else would end up paying for the morbidly obese and the wheelchair-bound.

A routine physical or really any routine procedure becomes difficult and time-consuming in this population. Offices would have to schedule double time for them and other patients would have to wait. If you could get reimbursed for a double appointment that would help.
On the other hand, being disabled doesn't exempt people from trying the best they can to take care of themselves.

A routine physical or really any routine procedure becomes difficult and time-consuming in this population. Offices would have to schedule double time for them and other patients would have to wait. If you could get reimbursed for a double appointment that would help.

On the other hand, being disabled doesn't exempt people from trying the best they can to take care of themselves.

The problem is federal mandates (ADA) without funding the extra work and expense involved in caring for these patients.

You can't expect every doctor's office to invest in very expensive extra equipment. Instead there should be at least one practice in a given area that does so, and that equipment should probably be paid for by a government disability program. Actually, I can see a specific area of a hospital such as an annex to an ER set up this way so it could be used for both purposes.

Not one comment framed the issue, the lack of physical access to physician offices, in a civil rights framework. Many expressed deep reservations about the cost of making medical offices and hospitals accessible. This concern is always linked with animosity directed at the Federal Government and so called unfunded mandates. This is grossly misleading. The ADA is not an unfunded mandate but civil rights legislation. Access and “reasonable accommodations” are required by the ADA. The ADA I would add is over twenty years old and enforced by the Department of Justice. The ADA is not some pseudo architectural requirement mandated by the Federal Government. The other obvious theme is what I would classify as segregation while commenters would deem it “special”; namely create a separate area for patients with a disability. The two themes identified illustrate just how much animosity is directed at people with a disability. Because our existence is not valued the general public balks at any and all expenditures directed toward full inclusion and equality. There is a deeply ingrained belief that wheelchair access is a choice—out of the goodness of our heart we are willing to spend some money on such access. But if the amount, an amount never identified, is too much well then too bad.  This misguided belief I blame on secondary school systems. As a society, we are quick to segregate people with a disability. Segregation starts in secondary schools replete with short buses and resource rooms where children with a disability are separated from their peers. A harsh lesson is being taught--segregation is the norm and socially appropriate. People with a disability and all those that could fall into a category anthropologists identify as the other do not belong beside typical people. We humans fear others that are different. The other can take many different forms. People with a well-known disabilities such as paralysis, blindness, profound cognitive disability, or mental illness. One could include those unusually tall, short or fat (obese). I would also include those that purposely or involuntarily become different: heavily tattooed people or those disfigured by cancer or an accident. The list of possible others is rather is sweeping but the social response to such others remains the same. 

I wish I had the answer to how to create a fully inclusive society. I wish I knew how to insure that all people share the same civil rights. Brilliant and famous men and women before me have failed in their efforts. Hence I know such an effort is less a specific goal than an ideal to strive for. I just feel that we are failing to make even a modicum of an effort today. Lip service is paid to laws such as the ADA. Forty years of progressive legislation has absolutely no social mandate—the comments following the article in question emphatically demonstrate this. I don’t get it. Disability is never going to disappear. It is in my estimation a integral part of humanity and our evolution.