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.

Summer Work: Disney Here I Come

I love to read the New York Post. It is the epitome of tabloid journalism. The NY Post has no redeeming value aside from funny headlines and good coverage of my favorite hockey team, the NY Rangers. I am very careful not to read the news or what passes for the news. Today I was amused to read an "exclusive" article, "Rich Manhattan Moms Hire Handicapped Tour Guides so Kids Can Cut Lines at Disney World, by Tara Palmeri. The article is so dreadful and meaningless I refuse to provide a link. Just use your imagination--that is good enough for NY Post journalists. The article prompted my good friend friend Stephen Kuusisto to write a post on his wonderfully imaginative blog Planet of the Blind. Gawker, Jezebel and the Gothamist "reported" about the NY Post story. Better yet, Wednesday Martin, a social anthropologist discovered the scheme.  Martin has a new book out, Primates of Park Avenue, and works as a writer. She has a PhD in comparative literature from Yale University. How this makes her an anthropologist I am not so sure. But we are dealing with the NY Post, facts are optional. What I loved about this story is the effort to make it sound as though a lurid under ground economy exists. I am here to tell you yes we crippled men and women cheat. We steal. We manipulate. We are, in short, human beings. Oh, the horror!

The NY Post story had me on the floor laughing when I read about "black-market Disney guides" and the existence of a "rogue guide service". But wait there is more--yes, this service is available to only to  "Manhattan's private School set". The inside information is passed around in a "ritualistic manner". You cannot make this shit up. Investigative journalism in the world of Ruppert Murdock. We are doomed!  Now I could get ornery like my friend Steve Kuusisto did, (http://www.planet-of-the-blind.com/), and with good reason. Like Steve, I too am upset what he calls "able bodied outrage" over the myriad of perks we people with a disability supposedly enjoy. But not me, no sir, I am not mad, angry, or upset. I see an opportunity. The real question for me is do I want to react as a heartless capitalistic pig or as an outraged person with a disability. A third options exists too--have the Society for Disability Studies investigate the matter. The SDS meetings are going to be held--you guessed it--in Disney Land. Sorry, but I cannot help but keep on laughing. Let me explore the possibilities.

First, heartless capitalistic pig option. Dream Tours, identified as the "black marketers" charge $130 an hour and charge $1,040 for an eight hour day. I will undercut Dream Tours. I will put on my pathetic cripple costume and look particularly needy. But wait there is more! I will charge a flat fee of $1,000 and include free sun screen. But wait there is, you guessed it, even more. I will provide PBJ sandwiches and juice boxes. For medical emergencies we can use Disney's readily available epipen for bee stings. Bees love those juice boxes kiddies. Nothing but the best for tawny well heeled parents from Manhattan. Sorry, Nobu is a bit out of my realm of experience.  Just think how hungry you will be after eating nothing but a soggy PBJ like your maid made when you were little. 

Second, outraged cripple approach. This is not a money maker. Think of this as an Americanized Survivor episode minus the exotic location. I get to travel with the Manhattan family to Florida. We can wait and hope an Access A Ride bus shows up to take us all to JFK. Sorry no limos for the crippled. I fear NPR would broadcast yet another story about how disability is in reality a total scam. Upon arrival we hope the elevator works. A big if but today we are lucky.  We get to wait in line to hand off our luggage to friendly airport workers. Of course, none will speak with me because I have the cripple plague. After waiting in line for over an hour we make our way to the gate. The agent is of course is thrilled to see a crippled family member. We can observe the delighted gate agent spend 10 minutes entering obscure codes into the computer and inform us we will "pre-board". Needless to say this will not go well. The trained professionals that arrive late are disinterested, have no clue what they are doing, and do not speak a word of English. Overlooking these mere inconveniences, we board and then get to watch every single person exit the plane upon arrival and wait and wait and wait and wait... Um, and wait for similarly well trained employees to get off the plane. Of course this assumes my wheelchair was not damaged because the crew insisted it be stored in the belly of the plane. Somehow my privileged crippled status and multiple perks r.e. airport travel will not go over well.

Three, an investigation performed by the SDS. Oh God save me. First, we will need to organize a committee. The committee will create a panel discussion. 19,000 emails will exchanged by interested parties and posted on every listsev known to humankind. One year later the committee will reconvene to discuss the panels findings. The results are not conclusive. Another panel will be formed, papers presented and 29,000 emails exchanged. A new president of the SDS will take over and declare the approach used to date was ableist from a Foucaultian perspective. Yet another panel will be formed. More papers delivered, 39,000 emails will be exchanged. A report will be issued five years later. It is a wonderful report. By God, it is a publishable quality report that puts a dagger in the heart of social and economic inequality. Temple University Press is thrilled. The acquisition editor is thrilled. The report is edited by all parties involved and sent out for scholarly review. Two years later the reviews come back. This is important work. Editing is needed but we are good to go. The revisions take two years, warp speed in academia, and nearly a decade later the SDS weighs in. Disney should consider the symbolic significance of creating a line for people who have atypical bodies. This questionable policy could cause people unfamiliar with disability culture to resent the presence of the other.  The SDS implores Disney to reconsider their approach to difference.  Perhaps a committee could be formed. 

Satire, you gotta love it. Apologies to all.

Assisted Suicide in Vermont: I am Worried

It appears assisted suicide legislation will soon pass into law in the state of Vermont. The Vermont State Senate voted 17-13 to pass the Patient Choice at the End of Life Act. The bill will be sent to back to the House and Governor Peter Shumlin is expected to sign the bill into law. This news has created a buzz because Vermont will become the third state in the nation to pass such legislation.  Proponents of assisted suicide legislation surely consider this a great victory (Thaddeus Pope at Medical Futility was down right gleeful, see http://medicalfutility.blogspot.com/2013/05/vermont-to-legalize-aid-in-dying.html). Opponents of assisted suicide such as the Death with Dignity Center, Vermont Right to Life Committee, Second Thoughts and Not Dead Yet are disappointed.

I am not surprised this bill was passed into law. Vermont, a small rural state with a small population, is a cultural entity unto itself. I deeply admire Vermonters. I have spent a lot of time in Vermont since I started skiing. But I am not a Vermonter and this is an important fact. For some Vermonters being from a different state disqualifies me from stating an opinion pro or con about Vermont legislation.  I get his. I am a New Yorker, an outsider. My business via ski tourism is welcome but I should butt out of Vermonters business. I get this. I do not come across many Vermonters stating an opinion about New York legislation. Vermont embraces an especially tough rugged type of individualism. I get this. Americans of every stripe embrace and value individual freedom. We applaud independence and a strong work ethic. And wow do the people of Vermont work hard.  The Vermonters I have met and skied with are good people. The very best in fact. Vermont really has communities that work together in ways I admire. If you doubt me read about the response to the recent hurricanes. In the face of a natural disaster Vermonters went out of their way to help others and rebuild roads and bridges at warp speed.  

If Vermonters are so great why did they pass assisted suicide legislation that I consider potentially dangerous?  I would speculate Vermonters have embraced a type of individualism that does not permit them to think about vulnerable populations and the risks they can encounter. I get this. Vermonters are individuals and members of a strong and vibrant community. We will take care of our own. We will care for the sick, elderly and disabled. I contend not every person is part of a community in Vermont. There are socially isolated people who have no social connections. This is an afront to Vermonters. 

Again, I admire the individualism and work ethic of Vermonters. So let me appeal and provide a Vermont based example of the risks I worry about when it comes to assisted suicide legislation. Amanda Baggs has Autism. She lives in Burlington Vermont. As many have already detailed, Baggs was recently seriously ill and in need of having a JG Tube inserted.  This is an ordinary surgical procedure and in Baggs case would undoubtedly be life saving. Yet this is not what some Vermont doctors thought was was the best course of action. They pressured Baggs to consider the “alternative”. The “alternative” here was death. Thankfully Baggs experience generated a strong response on the part of the Autistic community in particular and the disability rights community in general.  I could state much more about the response to Baggs experience but I want to remain Vermont specific. Rachel Cohen-Rottenberg, until recently a resident of Vermont, and person with Autism wrote: 

There has been a great deal made lately of the so-called right to die — the right of terminally ill patients to obtain a lethal dose of medication in order to end their lives. Advocates for “death with dignity” believe that they can put enough safeguards in place to ensure that people are able to make a free and autonomous decision, protected from outside pressure at the hands of parties who do not have their best interests at heart. Under our current system, the very notion of this kind of autonomy is a dangerous myth. There can be no free and autonomous decision to die with dignity when people who want to live with dignity are not encouraged to live — when the very idea that they can live with dignity is not even on the radar of the doctor who walks into the room. Let’s face it: disabled people represent the failure of the medical profession to live up to the mythology our culture has built around it — that cures are right around the corner, that medical science is all powerful, that life can be made perfect and pain free, and that even death can be put off indefinitely. People with disabilities are an affront to a culture that idolizes the medical profession and assigns it all kinds of power it does not have. The myths by which we live fail abruptly in the presence of a person with disabilities, and doctors are no more immune from the power of those myths than anyone else.

For more by Rachel Cohen Rottenberg see: http://www.disabilityandrepresentation.com/author/admin/

Cohen-Rottenberg's last line is chilling—“doctors are no more immune from the power of those myths than anyone else”.  Until 2010 I refused to believe a physician could be so biased (yes, I was that naive). I revere education and knowledge and refused to believe such a physician could be grossly biased against a population of people. This is what education is all about—instilling the ability to reason, to see shades of gray in a black and white world, to notice subtle nuances, and be free of bias. One experience in a hospital late at night shattered that illusion for me. It was a soul crushing experience I tried to bury with all my heart and all my soul. See:http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=5905  My experience, Amanda Baggs and an unknown number of others is exactly why I am worried--it is why all people should be worried. Like it or not, vulnerable populations exist in every state. In every state where assisted suicide is legal vulnerable populations are at an increased risk. Proponents of assisted suicide legislation scoff my concerns. They quickly point out no abuse I worry about has ever taken place in Oregon and Washington. What these people fail to mention is that state required reporting accounts for not much more than the barest demographics of the person that ended their life. Under state required reporting my experience and Baggs experience would not come to light. In fact Baggs and I are lucky. We had family and friends. Yes, I am indeed worried. What happens to those who are isolated and alone? What happens to an elderly person that has outlived his family and friends? What happens to a terminally ill person who is all alone? What happens to those with severe disabilities--especially those with profound cognitive disabilities? What happens to a person with a severe mental illness? Who will support and protect these people?  I hope Vermonters will heed my words and think about these questions. 

A Unique if Not Gross Dog Story

If you do not like dogs, labrador retrievers in particular, stop reading. I am not joking. Last night I got a delivery of groceries (this my guilty pleasure). I emptied all the bags on my counter and started thinking of meals to prepare. I love to cook and have become adept at making small meal portions that I freeze. I am happy as I cook and listen to the radio with interest as to how the Mets will do. Matt Harvey was going to be pitching later and he is a budding star. I was making multiple meals. I made four fancy hamburgers. I doctored up pasta sauce with lots of onions and home made meatballs. I cooked up some beets and put fresh chives on them. I made a chicken and bean sprout dish. I am set for at least a week in terms of meals. Life is very good.

My black lab Kate loves it when I cook. I am a sloppy cook and nothing that falls on the floor is left to chance. Kate watches me like a hawk. The minute I move away from the stove top she rushes over to eat and lick the floor clean. Last night was no exception. Kate is thrilled when carrots, a bit of meat, an onion, celery or any food item hits the floor.  She is like a vacuum. I am cutting and chopping away when I notice Kate is even more interested in me than usual. She is laying down on all fours and starts to inch closer to me. Surely I am not going to notice. But this is out of the norm. I chalk her creeping towards me to the smells of garlic, onion and cooking meat. I ignore her until I realize she is directly under my wheelchair and licking the floor with gusto. Her unadulterated joy is palatable. However, inching under my wheelchair in the kitchen is not allowed. She only goes under my wheelchair when she is afraid or feels danger is nearby. Something is clearly going on. I did not drop a big piece of meat on the floor or make any other sort of spill that would cause such happiness on her part. I order her to move and I discover the source of her pleasure.  I scratched my toe agains the brick wall in my kitchen and am bleeding. I am bleeding a lot. Kate likes my blood.  Scratch that. Kate loves to lick my blood. It gives her unparalleled joy that is rivaled only by her second favorite thing to lick--cream, specifically aquaphor. What is a single cripple guy supposed to do? I need put a band aide on my toe and douse it with hydrogen peroxide. My skin and wound care kit is in my bathroom. I am still bleeding and will leave a blood trail I do not want to clean up. Then it dawns on me I need not worry. Kate will follow me all the way to the bathroom and clean the floor with joy and vigor.

My toe is fine and Kate appears no worse for the wear. I was a bit worried about her though. Licking up blood cannot be good for her but I put my mind at ease--she was her usual energetic self in the morning. Her tail was wagging away and she had love in her eyes. Her entire body was pulsing with energy and was dying for me to get up and play. What a great relationship I have with her. The bond we share is humbling. I am as devoted to her as she is to me. But I have a confession. Kate is a unique dog. Like me, she does not understand bipedal people. In fact she is terrified of steps, a fear that I find fascinating but understandable. Steps are not relevant to her life or mine. She also has no clue how to physically move around people that are bipedal. If a person is walking toward her she does not move. Not an inch. She expects a bipedal person to alter their direction. In contrast, Kate understands wheelchair movement. She knows exactly what to do once I move or any other person using a wheelchair moves. Although Kate is highly social, she prefers to interact with people that use a wheelchair. Line up a dozen people, one of whom uses a wheelchair, and she will go to that individual every time. She will put her chin on this person's thigh. This has led me to wonder about the bond I share with her. Am I closer to her than your typical, meaning bipedal, dog owner? Does she know I am different? If so, is she protective of me? Does she sense the social stigma associated with wheelchair use? Sadly, I will never know the answer to these questions. I will end with this thought as it is time to go outside with Kate and have some fun.