Hate Crimes

I will assume most people interested in disability rights have heard about the hateful letter sent to the family of a person with Autism that lives in Newcastle Ontario. I showed this letter to my son earlier in the week when we were on the Canadian side of Niagra Falls. My son was outrage. Steam was coming out of his ears and profanity flowed from his lips. His face even flushed red. Aside from the hateful content what he could not wrap his head around was how the below letter was not considered to be a hate crime in Canada. I read multiple news reports and I understand why this vile letter is not a hate crime. What shocked me though was my reaction. Unlike my son, I read the letter and was not angry at all. I was not shocked. I thought it was a perfect example of ableist hate and social superiority. There is a reason people with a disability live at or below the poverty line. There is a reason people with a disability are unemployed in great numbers. There is a reason people with a disability do not get an adequate education or advanced degrees. The history of disability is as shocking as it is depressing. The legacy of exclusion is ever present and still profoundly influences the lives of people such as myself and others.  Oppression and isolation are a constant.  Thus when I read the letter what struck me was that an ignorant bigot was brazen enough to poorly express what I suspect many others think and feel but do not articulate: disability is a tragedy, a fate worse than death. The presence of people with a disability is an unwanted reminder of what can go wrong with life and the human body. How else do you explain persistent civil rights violations?

I understand the law. Hate crimes are very narrowly defined. Multiple lawyers on various cable news outlets and many newspapers explained why the below letter, though offensive, is not a hate crime. Read the below: 

The Letter

To the lady living at this address:

I also live in this neighbourhood and have a problem!!!!  You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in a close proximity neighbourhood like this????  You selfishly put your kid outside everyday and let him be a nothing but a nuisance and a problem to everyone else with that noise polluting whaling he constantly makes!!!  That noise he makes when he is outside isDREADFUL!!!!!!!!!!! It scares the hell out of my normal children!!!!!!!! When you feel your idiot kid needs air, take him to our park you dope!!! We have a nature trail!!!  Let him run around those places and make noise!!!!!! Crying babies , music, and even barking dogs are normal sounds in a residential neighbourhood!!!!!! He is NOT!!!!!!!!!!!

He is a nuisance to everyone and will always be that way!!!!!  Who the hell is going to care for him??????  No employer will hire him, no normal girl is going to marry/love him and you are not going to live forever!! Personally they should take whatever non retarded body parts he possesses and donate it to science.  What the hell else good is he to anyone!!!  You had a retarded kid, deal with it...properly!!!!!!  What right do you have to do this to hard working people!!!!!!!  I HATE people like you who believe, just because you have a special needs kid, you are entitled to special treatment!!!! GOD!!!!!!!

Do everyone in our community huge a [sic] favour and MOVE!!!!! VAMOSE!!!!! SCRAM!!!!! Move away and get out of this type of neighbourhood setting!!! Go live in a trailer or something with your wild kid!!! Nobody wants you living here and they don't have the guts to tell you!!!!!!

Do the right thing and move or euthanize him!!! Either way, we are ALL better off!!!

Sincerely,

One pissed off mother!!!!!

I am one pissed off cripple thanks to my son. I am angry because this is not a hate crime. This is a classic example of how disability is always somehow different. Disability in terms of civil rights raises a level of complexity people are ill equipped to analyze. No powerful symbols associated with disability rights are known to the general public. There is no Martin Luther King of disability rights that touched the hearts and minds of the nation. Bra burning women put feminism on the national news. Equal work for equal pay and gender equality became part of the national conscious. We as a people accepted women have the right to control their reproduction.  We people with a disability need comparable singular moment in time. Those in disability rights are well aware  such events have taken place. But this has not resonated--not even the ADA. Most people have a hazy idea a law was passed a long time ago and it solved all the problems disabled people like me encounter.

I try to put myself in the mind set of a lawyer. The letter above, a lawyer would maintain, is directed at a single individual. It is not hate speech inciting violence against a group or class of people. The letter is not a burning cross on the lawn of a black family in an all white neighborhood. While the letter is vile, it does not meet the letter of the law as a hate crime is currently defined. Canadian authorities are investigating the matter and trying to determine if it falls under a different criminal code. I get this sort of legal thinking and do not like it. I think it is very reasonable to assume the letter was directed at one person with Autism. What the law fails to do is take the next step--specifically the letter could have been directed at any person with Autism or other disability. In my estimation we people with a disability are a distinct an insular minority group. One of the members of my class of people was subjected to a hateful act. The next step, violence, I think is a real concern had the letter not gone viral. I consider this letter to be a threat to me and all people with a disability. It is without question an effort to undermine the civil rights of all people with a disability. Few get this. My thinking may lack the rigor of the law, a separate language I do not speak, but it is at minimum the sign of a much larger problem. The sooner we address the problem, violations of the civil rights of people with a disability, the better off all people will be. 

An Approaching Problem Society is Not Prepared For or Thinking About

I am not a big stats guy. My father used to tell me "figures don't lie liars figure". But when it comes to demographics I find statistics can be helpful. I came across a statistic at scioto.com that I think is critically important. 76% of the 4.3 people with developmental disabilities live at home. The family member that cares for such an individual is at least 60 years old. These care givers, most likely parents, were and remain warriors. These people cared for their child or children and rejected institutionalization either forced or coerced. They were a force that that led to 40 years of progressive legislation designed to empower all people with a disability.  These parents have worked hard to give their dependent children the best life humanly possible. They have done so with far too few resources and social support. In recent years these parents have been forced to fight for the meager assistance that exists because budgets have been slashed. As is often the case when budgets are cut the most vulnerable are impacted.

The generation of parents who have spent decades if not their entire lives caring for their dependent children and now dependent adults love them dearly--a fact utilitarian philosophers do not like to acknowledge in their quest to create a nomenclature to determine who is and is not a person. Scholars such as Peter Singer and Julian Savulescu just do not get disability at its most fundamental level. Nor does Dominic Wilkinson who recently published Death or Disability. In this text Wilkinson writes about "replacement" and substitute" children. Savulescu writes about post birth abortion and how parents have the moral obligation to conceive a child that is most likely to have a good quality of life. I find these views steeped in academic discourse deplorable. It may look good on paper, sound great at a conference such as the American Society of Bioethics and Humanities, but the reality is very different. Just ask or read the work of Eva Kittay or blogs such as Single Dad Disabled Daughter or Life with a Severely Disabled Child

This first generation of parents that have cared for severely disabled people are aging. They know that soon they will no longer be able to physically care for their child. Some of these people dependent upon parental care, many in fact, need 24 hour care. All parents of dependent children worry about their child. What is going to happen when they get too frail to care for their child? What will happen after they die? Multiple agencies that serve the needs of adults and children with profound disabilities are asking this question. Sadly, I feel no one who has not been directly touched by severe disability really cares. We as a society have replaced the horrors of large institutions and created more socially acceptable smaller institutions we call group homes. I do not mean to imply group homes are not good. Rather, any institutional setting is less than ideal when compared to a home environment.  We as a culture have failed to integrate people with cognitive and physical disabilities into the community. I bemoan this failure.

What gets me, what makes me furious, is the lack of acknowledgment both financial and social for the role these parents have played in the life of their children. These parents have literally saved the government hundreds of millions of dollars and provided the best care humanly possible. They have gotten very little in return from the government and society at large.  Frankly I do not get it. I do not get the fear and isolation associated with disability. I can assert myself and rail against the bias we call ableism. But what I experience pales in comparison to what people with a significant physical and cognitive disability encounter. The stares are not nice. The avoidance obvious and rude. When I see this I get upset. Go ahead, be rude to me. Be demeaning. I can take it. I can shove such bias back in another person's face if I want to. But please tell me what goes through the mind  of a person that is physically or mentally abusive to a person with a significant physical and cognitive disability? If a defenseless infant was abused all would be shocked and condemn the abuser. But what happens when a person with profound disabilities is abused or worse murdered?  The criminal or abuser is shown great mercy. Indeed, story after story of mercy killings are told. Robert Latimer who killed his daughter is no longer in prison. He is out and about speaking about his crime deemed a "compassionate homicide". He still believes he did nothing wrong. In 1993 the murder of Tracy Latimer was sensationalized in Canada and was used as a referendum to discuss euthanasia. In 2010 Latimer was released on parole. This leads me to ask if his daughter was "typical", that is not disabled, would he be free? No. Would he be sought out by the press? No. This sends a clear cultural message: the lives of disabled people are not valued, they are different somehow not fully human. Disability adds a level of complexity we are ill prepared to examine. The consequences of this can be deadly. Think Ugly Laws. Think Eugenics. Think involuntary sterilization. Think growth attenuation. Think assisted suicide. History is replete with lessons we choose to ignore.

Many scholars in bioethics and related health care fields are deeply concerned about aging baby boomers. All those forward looking are deeply concerned about aging boomers who will experience dementia. It is estimated that by 2050 there will be 13.8 million people with some form of Alzheimer's like dementia. The cost of caring for people with demential will likely exceed $1.1 trillion dollars and consume 70% of Medicare and Medicaid dollars. I have followed the concerns many have expressed about those who will experience dementia. I have yet to see any scholar outside those directly tied to caring for those with profound disabilities (think ARC) to express any interest the life of aging parents caring for a dependent adult. What will happen to this population of severely disabled and dependent people? What will happen to people with severe disabilities whose parents are too frail to care for them?  My greatest fear is that dual suicides will increase. Regardless, this is an issue that must be addressed.

Tara Palmeri on Service Dogs: Misleading and Problematic

Tara Palmeri is at it again. A second article on service dog abuse appeared in the NY Post today. As with Palmeri's previous article I lambasted, she does not let factual information interfere with a catchy headline and objectionable photograph above. Palmeri  wrote she "borrowed my mom’s wacky golden retriever/poodle mix “Hampton’’ for a day to check out The Post’s recent report that dog lovers are decking out their pooches with phony vests and fake ID tags to get them into fancy restaurants and shops. The first stop for our party of five — Hampton and four human pals willing to lie for him — was Orsay on Lexington Avenue.Hampton — showing off his phony “service dog’’ patch we had specially embroidered — happily slobbered as he wolfed down an 8-ounce salmon filet." The photograph and article has one intent: outrage readers. The dog owners that knowingly purchase fake service dog vests are not taken to task. Utterly ignored is how bogus service animals affect the experience of people with a disability who form a service dog team. The fact is people with a disability that use a service dog routinely encounter discrimination (this would make a great article). Where in Palmeri's estimation does fault lie?  The American with Disabilities Act is to blame! 

Palmeri mixes fact and fiction. There is a grain of truth in what she wrote. For example, at the restaurant she took the poorly behaved pet to the  "maitre d' couldn't ask because the Americans with Disabilities Act prohibits businesses from demanding a canine's credentials. It also doesn't allow managers ask its human companion about their disability". This assessment is grossly misleading and the language utilized is of importance. First, the ADA was revised to address the problem of fake service dogs in 2011. The Department of Justice, tasked with enforcing the ADA, permits business owners to ask two questions of people that use service dogs. First, is the animal a service dog, and second, what is the service dog trained to do. Given this, a person that brings a fake service dog into any business establishment is a liar who has violated Federal Civil rights legislation. Palmeri is correct about one thing: business owners cannot ask a person about their disability. This would violate the ADA. A person's disability is not relevant--a point Palmeri completely missed. What is relevant? As already stated is the dog in question appropriately trained and what is it trained to do. This is all a business owner needs to know. What is of interest to me is the wording in the article. Palmeri thinks business owners can "demand" proof of a "canine's credentials". This is incorrect. No service dog owner is required to prove his animal is "credentialed". This idea, a service dog owner must carry documentation or papers, is false and illegal. More generally, does a business owner have the right to demand any information from a customer? The assumption here is that people with a disability are inherently unequal--that is a person without a disability can, when the whim strikes, ask invasive and inappropriate questions. This phenomenon is common--every person with a disability I have ever met is routinely asked inappropriate questions.  

I am disturbed by Palmeri's articles. First, anyone with even limited exposure to service dogs quickly observes the difference between a pet and a service dog is profound. A pet such as the one Palmeri borrowed behavior was grossly inappropriate. If a service dog acted like Palmeri's borrowed pet did it would be immediately corrected and removed from the establishment. What Palmeri is relying on is ignorance. The general public and businesses large and small do not care about the ADA. The ADA is a burden, Federal legislation that must be complied with. The civil rights of people with a disability are always somehow different. This sort of dehumanization process plays a prominent role in Palmer's article. She leads the reader to an erroneous if not illegal conclusion: any person, especially business owners, can at any time "demand" a service dog "credentials". The fault is not with able bodied pet owners that lie but with the ADA. Sadly, the glib headlines and photograph will do much harm. I suspect guide teams will face increased scrutiny and discrimination when they try and have an ordinary day. But if I have learned one thing in the last 35 plus years of using a wheelchair it is that the ordinary is illusive for people with a visible disability.        

John Kelly Guest Poet on Death NYT Style

On July 17 I took the NYT to task. I was severely critical of an article by Robin Marantz Henig "A Real Life-or-Death Situation".  I received a lot of email about my post.  Some felt I was not fair to the Brooke Hopkins and his wife Peggy Battin. This was not my intent. My critique was aimed at the New York Times in general and the the way the article in question framed by Henig. I was not critiquing Hopkins or Battin and the way they coped with SCI. The disabled body, Brooke Hopkins body and by extension disabled bodies, as depicted by Henig was demeaning in the extreme. I fired off a blistering email to Henig and to her credit she replied and apologized for the way the body was described in her article. I accepted her apology.  I do not think she did this on purpose. As the comments following my post noted, many people missed the demeaning description of the disabled body.

A few days ago I received an email from Joh Kelly, a fellow Not Dead Yet board member and director of Second Thoughts.  Kelly is a sharp guy and spear headed the opposition to assisted suicide legislation in MA.  He took creative liberties with Henig's NYT article and wrote the following poem.  Thanks go to John for letting me post this.

A Diaper and Green Crocs: A Right to Die Case Study

Words by Robin Marantz Henig, Arranged by John Kelly

Ensnared in the life-sustaining machinery he hoped to avoid –

a plugged-in mannequin in the I.C.U.

Physically ravaged,

a quadriplegic, paralyzed from the shoulders down.

All that energy went absolutely still at the moment of his collision –

might never again walk, turn over or breathe on his own.

Alot of unsightly phlegm,

day after day, day after day, day after day.

Such a constrained and difficult life –

dependence, indignity and sheer physical travail.

Spasms, pain, catheterizations, bouts of pneumonia, infected abscesses in his groin,

no mind can fly free of a useless body’s incessant neediness.

Progressively more useless bodies –

lives intolerable because of chronic illness, serious injury or extreme old age.

A way to pre-empt old-age catastrophes,

Self-deliverance.

Each body harbors its own form of decay –

Inert sack of a body, impassive as Buddha

Each body harbors its own form of decay –

Inert sack of a body, impassive as Buddha

Pervasive dependency –

a diaper and green Crocs.

An aged couple planning a tandem suicide to make way for the younger generation.

Kill the dogs in a  psych experiment,

“euthanasia.”

death with dignity.

The NY Post Attacks the ADA Again

The local New York tabloid the Post us at it again. Yes, Tara Palmeri, the “journalist” who broke the Disney World story about rich Manhattan residents hiring people with a disability so their kids would not have to wait on line, has another disability related exclusive.  Today Palmeri has written “New Yorkers Use Bogus Therapy Dog Tags to Take Fido Everywhere”.  Link: http://www.nypost.com/p/news/local/stupid_dog_trick_1nMC3NBq6sPfyzlpXdiDkN

 According to Palmeri, Manhattan residents are purchasing fake therapy dog vests so one can bring their small dogs into stores and restaurants.  I take anything I read in the Post with a huge grain of salt. The Post generates playful headlines and I do my best to restrict my reading to the sports section. Today I failed. The giant banner, Exclusive, was just too enticing.  As Rupert Murdoch knows yellow journalism and eye catching headlines sells newspapers. Check out this picture published by the Post. 

 Palmeri's story, like many Post exclusives, is misleading and filled with half-truths.  According to Palmeri, “To obtain a legitimate [sympathy] tag, an applicant only needs to present a letter from a dog trainer saying the dog can perform certain useful tasks. Proof of a disability isn’t required.” This statement is false. At best one could label it as grossly misleading.  I am by no means an expert on the difference between service dogs, therapy dogs, and guide dogs. However, I have been around  service dogs and guide dogs. These are amazingly well trained animals. Their behavior, near perfect, sticks out like a sore thumb. I also know this requires great dedication on the part of many organizations throughout the nation that seek to empower people with a disability.  In my estimation service dogs and guide dogs are fundamentally different animals and share a unique bond with their owners. These dogs are not pets. These dogs can and do make a rich and full life for people with a disability possible. 

I did a basic google search about therapy dogs. I will concede the laws pertaining to therapy dogs are confusing. Emotional Support Animals also known as therapy dogs “are not the same as Service Dogs (SDs). ESAs are Therapeutic Pets, usually prescribed by a therapist or psychiatrist or doctor, that help the disabled with emotional difficulties or with loneliness. They may include cats and birds. Under the US Federal Laws, Emotional Support Animals (ESAs) cannot go into no-pets-allowed places, BUT THEY ARE ALLOWED to live in “no-pet” housing and in the cabins of airplanes when accompanied by a note from their handler’s doctor.

The above quote was not hard to find. Multiple websites discuss in great detail what a service animal is. For example, Pet Partners states:

Service Animals are legally defined (Americans With Disabilities Act, 1990) and are trained to meet the disability-related needs of their handlers who have disabilities. Federal laws protect the rights of individuals with disabilities to be accompanied by their service animals in public places. Service animals are not considered 'pets'.

Therapy Animals are not legally defined by federal law, but some states have laws defining therapy animals. They provide people with contact to animals, but are not limited to working with people who have disabilities. They are usually the personal pets of their handlers, and work with their handlers to provide services to others. Federal laws have no provisions for people to be accompanied by therapy animals in places of public accommodation that have "no pets" policies. Therapy animals usually are not service animals.

I cannot help but conclude Palmeri and the editors of the NY Post were far more interested in a catchy headline than a news story based on factual information. I can over look this—we are talking about the Post afterall. But I cringed when I read one man state “Sometimes, they’ll give me a hassle and say bring the papers next time, but for five bucks, you order [a patch] off eBay, and it works 90 percent of the time.” This sort of narcissism bothers me because it is all too common for blind people with a guide dog to encounter bias. Being refused service in a restaurant or store is a routine civil rights violation many people who are blind have experienced.  What Palmeri and the man quoted are counting on is an ignorant populace.  This has a direct impact on the lives of real people who use a service dog or guide dog.  Imagine you are blind and you and a guide dog team, human and animal, try and enter a restaurant with friends.  Instead of being welcomed you are asked for “papers” proving your dog is a legitimate guide dog.  According to the latest from the US Department of Justice Civil Rights Division Disability Rights Section “ When it is not obvious what service an animal provides, only limited inquiries are allowed. Staff may ask two questions: (1) is the dog a service animal required because of a disability, and (2) what work or task has the dog been trained to perform. Staff cannot ask about the person’s disability, require medical documentation, require a special identification card or training documentation for the dog, or ask that the dog demonstrate its ability to perform the work or task.”

Again the quote form the US Department of Justice was not hard not find. Palmeri could have found this easily. Palmeri had no interest in writing an accurate or fair story about therapy dogs. Her story was not really about those individuals that scam the ADA so they can bring their pets with them. Her exclusive article was based on a larger cultural phenomenon: the unarticulated animosity directed at people with a disability. In this case it was about people with a service dog. In her previous article about Disney World it was about those that use wheelchairs. What Palmeri is attacking is the idea that the ADA provides “special” accommodations for people with a disability.  Special in this context is akin to unfair perks. Think handicapped parking. Palmeri relied upon the fact few equate disability rights with civil rights. She framed her article so the ADA, civil rights legislation enforced by the US Department of Justice, was perceived to be an unfair advantage used by people with a disability. Palmeri tapped into the cultural ideal that all Americans are equal.  This is something I would hope all Americans aspire to see but know it is an ideal that is illusive.  And sadly today I feel very much alone in my efforts for inclusion—especially after mistakenly reading the NY Post. I hope in the future Palmeri sticks to page six gossip columns. 

Brooke Hopkins Dies

On July 17 I took strong exception to an article in the New York Times by Robin Marantz Henig. In my post, The NYT Infuriates Me, I took Henig to task for how she described the disabled body. This was not intended as a critique of Brooke Hopkins or his wife who is a well known bioethicist. For me, at issue was with the portrayal of the couple by the journalist in question.  For those unfamiliar with disability, I suspect it is possible to conclude death is preferable to life with a disability.  The reason I note this is that I was sad to learn that Brooke died. Here is a link about Brooke Hopkins death: http://www.sltrib.com/sltrib/news/56674337-78/hopkins-accident-battin-bike.html.csp

Assisted Suicide and Medical Technology: A Social Failure

I was paralyzed in 1978. As my son would say that was a long time ago--the olden days in his estimation. Without him around my summer has seemed disjointed. Nothing has worked out quite like I had hoped and I have been preoccupied with the Fall. I start teaching August 26 and I will hold two classes before Labor Day, the unofficial end of the summer. I am nervous too. I will be teaching honors students at Syracuse University. My class, "From Prenatal Testing to Alzheimer's: Issues in Bioethics and Disability" is new and my first firmly rooted in bioethics. I veered head long into bioethics in 2006 when I heard about the Ashley Treatment or what has become known as growth attenuation. I was stunned in 2006 and remain stunned in 2013 that such a procedure could be performed. How I wonder could an ethics committee allow this to happen? My interest in growth attenuation led me to delve deeply into assisted suicide legislation and this has rekindled a long dormant interest in what happens to people after they become paralyzed.  I am now troubled not only about the larger cultural push to accept assisted suicide but also the severely limited amount of time people who experience a sudden spinal cord injury are given to adapt to paralysis. Add to this a rapidly expanding elderly population and increasing reliance on medical technology to prolong life, an absolute lack of care about vulnerable populations, and a toxic social situation has been created.

The noted bioethicist Daniel Callahan has written about our over reliance on medical technology in Taming the Beast, a book I highly recommend. Callahan notes that many directly benefit from advances in medical technology but there is a down side--something anthropologists and archaeologists have often observed about many societies, complex and simple. High tech medical care is not cheap and is in fact highly profitable. One corporation that has created a cash cow is the wound vacuum. 7 million people world wide have used the wound vacuum.  There are 42,000 units in service, and KCI, a company I quickly learned to despise when I used a wound vacuum, has a 1,000 member clinical sales team. There is no question my wound healed more quickly because of the wound vacuum. What KCI and other corporations that produce high tech medical products do not want consumers to think about is cost and what happens when a company like KCI  owns a virtual monopoly on wound care. Yes I benefited from the wound vacuum. It is a spectacular invention, has saved many lives, and revolutionized wound care. But I was also ground down emotionally and financially from the use of the wound vacuum for an extended period of time. What keeps me up at night, what makes me worried about elderly people, the terminally ill, chronically ill,  and disabled is the impact high tech medical care has on a human being. This was a hard lesson I learned in 2010 into 2011. I received outstanding medical care, saw superb wound care specialists, met a skilled surgeon who followed my wound care from beginning to end, and am deeply indebted to my family who were more supportive than a person could possibly hope.

So here I sit at my desk fully healed and I can safely say 2010/2011 was the worst period of my life. I am a fundamentally different person as a result. Bodily my life was saved by the wound vacuum. My confidence  however was shattered in the process. My body took a year to heal but my mind is still very much a work in progress. Always interested in marginalized populations as many anthropologists are, my resolve to inject a dose of humanism in medical care and bioethics has reached new heights. I am deeply disturbed by how vulnerable people are treated. I am not suggesting the medical system, even a for profit system that exists in the United States, is designed to grind up and knowingly kill vulnerable people. KCI wanted my wound to heal as did I but at what cost? More generally, how do we frame illness for the poor, elderly, and disabled? Are we as a culture willing to empower such people and help them heal? Are we willing to seek the best possible care for all people? In a word no. Surely I am exaggerating the situation. Sorry but no. The medical industrial complex is a hostile place for those that are different and costly. Of course no institution or person will admit to such hostility. It is always framed in socially acceptable language. For example, the buzz word "patient centered care" is often used in and outside of a clinical setting.  To me the true meaning of the words "patient centered care" are sorry but you are on your own. Enter stage left a supposedly informed and objective health care provider who will explain your options and let you make your own decision. This I am sure sounds great in an office, a corporate boardroom, or at an academic conference. The clinical realty is quite different. For instance, does a paralyzed person really have a choice about using a wound vacuum if its use is not covered by health insurance. Last I checked a wound vacuum costs $130 to rent per day and this does not include the cost of nursing or wound dressings which are significant.

Further complicating "patient centered care" is the concept of "joint decision making". In theory it is easy for a physician to suggest the best possible care for a patient.  In theory such decision making strategies should be reached with equal input. The physician acts as expert guide and the patient is empowered to put plans jointly decided into practice.  I am sure a flow chart exists somewhere that beautifully illustrates this mythic equality. Excluded from this supposedly joint decision making process is the biases and preconceived notions the physician and patient may or may not have. The reality of joint decisions often falls far short of ideal. For instance, physician and patient agree that a person with a SCI and recently healed wound should relieve pressure throughout the day. This is sound advice. But what happens if the person with a recently healed wound is required to work all day and care for a family. Will an employer be willing to provide a reasonable accommodation under the ADA by letting the person in question lay down on a futon at work? Not likely--a point made by Lenny Davis in his essay "Bending Over Backwards".  Let me expand on this example. The person in question decides he or she must work. They push their body knowing their skin will breakdown. And let's say their skin does in fact breakdown. This person returns to the local wound care department. The physician and staff are not happy to see this person return. It is reasonable to assume this patient will be deemed a noncompliant patient. What will not be charted is why the person has fallen into the stigmatized category of noncompliance.

When I express my views about how people with a recent SCI are set up to fail people are shocked. When I express my views about end of life issues and how vulnerable populations are at risk I am accused of being an alarmist. The cartoon above however is not too far from the truth. When it comes to disability those I know who have successfully navigated life all were willing to adapt and be creative. Society's unwillingness to negotiate difference could be considered a failure of imagination as my friend and poet Stephen Kuusisto puts it. He is being too kind. Powerful forces exist that grind people down at a glacial pace lowering and lowering their expectations, hopes and dreams. The spirit of people with a disability and those nearing the end of their life, two different but vulnerable populations, are being crushed by an at times cruel health care system. How does this play out int he real world? Well people with a SCI are not given the time or skills needed to survive a hostile social environment. Instead, they are encouraged to use an exoskeleton, think about stem cell treatments that virtually no one can afford and are not proven to be successful, and participate in various clinical trials. Yes, money has perverted traditional rehabilitation efforts--basic hard work that helped one refine their ADLs. The result is a person suddenly finds their living situation intolerable years later. No job, no work, and no quality of life. This is a social failure of epic proportions and hence the reason the above cartoon made me laugh is because it reflects a reality that exists.