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.   

High-school Prom: A lesson in discrimination

I did not go to my high-school prom. I knew few people in high-school in large part because I spent most of those years in the hospital. As an adult when the subject of proms comes up I often see women cringe when they look at photographs of the dress they wore. Men shake their head over the bad haircuts, peach fuzz on chins and awkward poses. Some recall getting drunk. Others recall a sexual tryst. While high-school proms do not resonate for  me, I understand for many (perhaps most) it is a big deal. Thus I read with interest about a young man in Oregon who tried to go to his prom and was confronted with an inaccessible venue. Initially I was not impressed. When my son was in public school the administration was consistently hostile to any effort I made to be involved with my son's education that required a so called reasonable accommodation. For instance I was prevented from going on any field-trip because the school owned a single short accessible bus referred to by students as the "retard bus". My son was aghast at the suggestion this bus might be used. Thus when I read about the young man who encountered an inaccessible venue I thought this was business as usual. The articles I read were largely supportive and the comments nothing short of hateful. The primary goal seemed to be finding out who could be blamed for the so called mishap. See "Disabled Lake Oswego Senior Arrives for Prom but Can't Get In, http://www.oregonlive.com/lake-oswego/index.ssf/2013/05/lake_oswego_senior_arrives_for.html   

I have no interest in assessing blame. I refuse to play this classic American game. I do not care about who is to blame. I care about fixing the problem. The problem is the inclusion of this young man was an after thought at best, his existence singularly unusual and never to be repeated. I have encountered the situation this young man encountered many times in my life. People who suddenly notice a gross lack of access become upset. It is as though the lack of access never existed. Stupid ideas are suggested. Maybe we can lift him up a flight of steps? Great idea provided the person getting lifted is not dropped. And yes this has happened to me many times when I was young and dumb enough to allow people to carry me. The principal was upset and stated "we are trying to come up with any way he could be there". Far too little far too late. This young man's mother was furious. She expressed her fury to the school board and encouraged the school to find out what went wrong. It appears all agree the student had the right to attend the prom. Gee, how nice and liberal. A school official noted in a letter sent to parents "this is a mistake that never should have happened. We have a responsibility to provide accessible facilities for school functions, and we should have been aware of any limitations prior to leasing for this year's prom". I have three words for the school official: utter bull shit. Let me explain what the school official is really saying. We screwed up we are sorry. It was an isolated error. Osrry but this was no small mistake. It was a flagrant civil rights violation. The telling phrase is "we should have been aware of any limitations". I have heard this type of line dozens of time. What the official is really saying is we like the venue, it fits our budget. In the future we will make sure no pesky wheelchair users show up for the prom. If such a person is going to attend we need to know in advance. Only then will we search out accessible venues. If the pesky wheelchair user that insists on showing up, creating extra work, and selfishly draining the school budget is not liked or deemed a problem child an inaccessible venue will used. The only difference is the person will be notified in advance. Again, this was standard practice when my son was in public school. I sincerely doubt anything has changed in the last three years given the fact school budgets are increasingly limited. 

Most news reports state the school has been accommodating in the past. They also state the young man in question attended school dances and sporting events such as football games. These sort of statements are bizarre and remind me of a line I hate to hear directed at me--"It is so good to see you out". Is this student not supposed to go to football games and dances? Yes, the ordinary is impossible for us pesky crippled people. Wow, you can attend a dance! Wow, you can drive! Wow, you like sports! It is as though you are almost human. Bipedal people rule. Bipedal people have the power to decide when and under what circumstances the ever so special wheelchair user is permitted to show up. Of course this is ever so generous of the morally and physically superior bipedal hoards that rule the country. Sorry but no. The young man in question father stated sorry is not good enough. I agree. I do not want to hear sorry. I want to know the rock solid plan that is being devised to make sure this never happens again. Better yet, I want to hear about a group of parents that ban together like Mothers Against Drunk Driving (MADD) dedicated to making sure every prom in the United States is 100% accessible. But let's not stop there. Every prom will also have accessible transportation as well. When that happens I will know significant social progress has been made. I am hopeful we may have taken a tiny step forward. In Salem Representative Sara Gelser (D-Corvallis) a member of the National Council on Disability spoke about the incident.



I do not like the emotional tone but the positives of Gelser's short speech far outweigh any minor complaints about language. I was struck by one image though. The fact the young man ended up alone with his parents while all the other seniors danced away and had great fun. Imagine if the seniors, this young man's peer group, stopped--that is they refused to dance. Imagine if in mass they refused to participate in an event that was exclusionary. This would have been civil disobedience at its finest.  This could have made national headlines. What a wasted opportunity. Sorry, I am dreaming big today. 

Growth Attenuation, Intersex and Bodily Integrity

One of may favorite scholars is Alice Dreger. I find her work fascinating because it makes me think in a different way. Dreger studies and advocates on behalf of people with intersex conditions. I deeply admire her scholarship, advocacy and ability to enhance people's understanding of interesex conditions. As I understand it, intersex is the condition where an individual is born with biological features that are thought to be male and female. Sometimes referred to as ambiguous genitalia the history of people with intersex conditions is disturbing. Early sex assingnment surgery is the conventional response on the part of medical science. For far too long the ethics of such surgery was not questioned. Dreger also studied conjoined twins and standard medical care. Separation surgery was the norm because it was assumed conjoined twins could not lead a normal life. In her book, One of Us, Dreger clearly demonstrates conjoined twins can and have lived  full and rich lives. There are obvious parallels between Dreger's work and the history of disability. In fact the subtitle of One of Us is Conjoined Twins and the Future of Normal.  Normal here is meant in the context of how do we select medical treatments and use medical technology. I agree with Dreger that too many standard medical protocols cause as much damage as they help. Dreger wrote:

In the United States, the values of individualism, self-improvement, fee enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed even expected--to employ medical technologies that alter one's anatomy and make it more socially advantageous".  

I think a connection between the past and present medical response to interex, conjoined twins, and those children who could potentially be subjected to growth attenuation can be established. By those children I am referring to young people with severe cognitive and physical deficits. I am prompted to make this connection by an article Dreger wrote "When to Do Surgery on a Child Born with Both Genitals" in the Atlantic. See: http://www.theatlantic.com/health/archive/2013/05/when-to-do-surgery-on-a-child-with-both-genitalia/275884/ I do not envy Dreger's effort to raise the level of understanding about intersex conditions. People accept without thought the stark dichotomy between male and female.  Two genders exist and much cultural effort is put into maintaining that stark dichotomy. In fact I would argue we celebrate and value the difference between men and women and in a myriad of ways seek to enhance that dichotomy. While this may work for the majority of the population, it provides the opportunity for medical science and technology to reinforce this dichotomy via questionable treatments such as sex reassignment surgery. In the Atlantic Dreger writes about a 16 month old foster child from South Carolina identified as M.C. who underwent surgery to correct ambiguous genitalia. The goal was to make M.C. genitals look more feminine. M.C. is now eight years old and identifies as a boy. His adoptive parents believe that the state was wrong to allow the surgery. They also argue doctors were wrong not to inform those making the decision on the part of M.C. that the surgery was not medically necessary. The parents recently filed a lawsuit on behalf of M.C. that alleges doctors "robbed M.C. not only of his healthy genital tissue but also of the opportunity to decide what should happen to his own body". When I read Dreger's article it took about a second begin thinking about parallels between the so called Ashley Treatment and sex reassignment surgery. While Dreger worries about how the court will respond, and she has a sound reason to be concerned, I wonder if the outcome of this case can be applied to growth attenuation. Dreger wrote

it will be interesting to see whether the courts agree with the plaintiff's lawyers that the 14th Amendment is at play here, and whether they will limit that Amendment's scope to cases where "a boy lost his penis." If, in fact, they understand the case as being an unfair situation in which "a child lost healthy genital tissue for no legitimate medical reason without fully informed consent," then the implications will be much broader, perhaps touching even on routine neonatal male circumcision.

I agree the implications could indeed pertain to male circumcision. However, I would speculate the possibilities are even wider in scope. Wider not in terms of the number of boys who may not be circumcised but in limiting radical procedures such as growth attenuation and sex reassignment surgery. Dreger concluded her essay noting that 

since M.C. was born -- major medical consensuses have moved away from the assumption that genital-normalizing surgery is required in all cases of intersex. This case is likely to drive surgeons to be even more hesitant to remove healthy genital tissue and healthy gonads from children like M.C. Ideally, the case will also lead more parents like Mark and Pam Crawford to understand that parenting sometimes involves forms of unpredictability that cannot, and even should not, be made to disappear.

I think any physician who is considering to radically alter a child's body would be extremely hesitant to make such a suggestion to parents. I think sex reassignment surgery, separation surgery with a very high mortality rate for conjoined twins, and growth attenuation all qualify as radical body alterations. I would also speculate children being considered for these radical procedures need to be protected by the fullest extent to the law. At minimum, such a child should be represented by a disinterested third party. I am not suggesting every surgical procedure performed on a child be subject to a legal review. Parents are given great latitude, as they should be, in making critically important health care decisions. However,  some radical procedures warrant an added level of child protection and advocacy.  I think the past and present use of sex reassignment surgery demonstrate this fact. Dreger noted that "many intersex women who had their clitorises surgically shortened in infancy are legitimately angry about having had tissue (and thus sensation) taken from them." Obviously the differences between the intersex and those with profound cognitive and physical deficits is significant. Yet I would suggest both populations have a right to their bodily integrity--they are afterall human beings born with the same rights as those reading these words. More generally I bemoan the fact medical technology is being used in ways that I think can be deemed ethically questionable. Radical surgery can not solve the social problems people who have an intersex condition will encounter. The same can be said for growth attenuation. Rendering a child small as Ashley X parents did may make her physically easier to care for but will not address the profound problems people with cognitive and physical deficits encounter (and by problems I mean shocking abuse and a gross lack of social supports). Hence I would conclude we, meaning all of us, need to do exactly what Dreger's subtitle suggested--reconsider what we deem normal. As one with an atypical body I think it is well past time to broaden our thinking and create a more inclusive society.  

Misplaced Outrage

I mocked the controversy created by the New York Post story about Disney Land. In case you missed it Wednesday Martin has alleged that wealthy Manhattan parents have hired people with a disability with the express purpose of eliminating waiting on line. The fact this story has prompted an extended amount of coverage bothers me. First, we are talking about the NY Post, a tabloid owned by Ruppert Murdock. Not exactly a paragon of journalism. But let's put this aside. Who is outraged? In my estimation people that know nothing about disability. The headlines are about what I expected:

Disney World Scam: Wealthy Moms Rent Disabled Guides to Skip Lines (and Shame Humankind)

How I scammed the Disney World Wheelchair Line System

Disney Probes Sleazy Riders

Disney World Scheme: Entitled Families Hire Disabled Guide to Bypass Lines, Says Report

Yeah No: Rich Manhattan Moms Allegedly Renting Disabled People to Skip Lines at Disney World

I thought this story would have a short shelf life. Now I am not so sure. CNN picked up the story and as expected all Florida based news outlets are discussing it. The fact is this is not news at all. People have been using this scam at Disneyand elsewhere for a long time. Thus this is a new twist on an old story with the perfect villain: uber wealthy Manhattanites. Damn those 1% parents and their children too!

When I read stories about disability scams I shrug. The outrage expressed puzzles me. I have had my civil rights violated in a myriad of ways. For instance, I have been refused entry to restaurants in New York City; no wheelchairs I am told. I have had many a taxi pass me by to pick up a bipedal customer. I have had bus drivers lie to me and say the lift is not working or that they do not know how to use it.  I have had rental companies assure me a car with hand controls is available only to find out the car is "lost" in transit. When such incidents take place non disabled people look away. I cannot recall anyone ever coming to my defense when I suffered gross inequities at let's say an airport. I cannot recall a single person that expressed outrage when I was being denigrated by someone who clearly held power. Hence, I shrug about Disney and the angst expressed. It is misplaced emotion. I wonder where are these people when the school board decides not to put a lift on a bus? Where are these people when the special education budget is cut? Where are these people when Mayor Bloomberg selected an inaccessible taxi of tomorrow? Where are these people when technology for people with a vision impairment is deemed too costly? Where are these people when a new facility is constructed but does not meet ADA requirements? Where are these people? Nowhere to be found and silent. This is bad, a terrible social dynamic. What people say and what people actually do is radically different. This is a giant social problem. Who is too blame? Me and everyone reading these words. This social failure reminds me of the classic film Cool Hand Luke. The brutal guard looks at Luke behind aviator sun glasses, hat pulled down low and states: "What we have here is a failure to communicate".

In addition to a stunning level of ignorance about disability in general, I have an additional concern. As noted in my previous post about the Disney is the emergence of able bodied outrage. Here I refer to a multitude of stories that question what I would classify as a reasonable accommodation for people with a disability. The most well known story about what a treat it is to have a disability pertains to airport security lines. More often than not, people with a disability do not wait on line. We are shuttled off to a different and shorter line. This is a reasonable accommodation and mitigates a multitude of different disabilities. People see this and think oh man you are so lucky. Well I do not feel lucky when I am the very first person on the plane and the very last person off the plane. I do not feel lucky when my wheelchair comes back from the belly of the plane and is damaged. I do not feel lucky when a supposedly trained person asks me to "walk just a little bit". This too is a reasonable accommodation one I find decidedly unreasonable

At issue for me is how do we raise the level of understanding. How do we get all people to think disability rights and civil rights are one in the same? Disability studies has been ineffectual. The disability rights movement has stagnated in recent years. ADAPT demonstrations are utterly ignored by the press. So how do we educate and make the bipedal masses see disability for what it really is? I have no clue. And that is problem number one.