TED Talk and Richard Senelick MD Miss the Point

I have been spending an increasing amount of time with clinicians. These men and women perplex me. On the one had, they are very smart, work hard, and are clearly dedicated to patient welfare. They truly want to do their best. I admire this. On the other hand, the majority of clinicians I meet are clueless when it comes to disability. Clueless not within the very narrow confines of medical care but rather with the larger social implications of life with a disability. Clinicians know they work within a medical model of disability and most are aware a social model of disability exists. This is I suppose progress but it is glacial at best. This morning I was thinking to myself, I am being too harsh. There is only so much a doctor can do and that there must be a way I can reach them. That is get them to understand what they suggest and reality for a person with a disability are two different things.  Then I read "Disabilities Can Teach Us How to Live" by Richard Senelick MD in the Huffington Post, and came away deeply depressed. See: http://www.huffingtonpost.com/richard-c-senelick-md/joshua-prager-ted-talk_b_3839547.html  Senelick is a prolific writer,  has his own website, richardsenelick.com, and is the Medical Director at the Rehabilitation Institute of San Antonio (RIOSA). According to Senelick's website since he began working at RIOSA he has been on "a journey of advocacy and education for people with disabilities". When I read this I was not encouraged. I was just sad. I get a sense Senelick is skilled clinician but has no conception the world is a hostile place for people with a disability.

Let me add some provisos to my gloomy assessment of Senelick. I assume Senelick is a good clinician and advocate for his patients. I have not read any of Senelick's articles or books beyond what I accessed at his website. Perhaps his words in the Huffington Post article mentioned above were changed by an editor. Maybe he wrote in my estimation one questionable article and the corpus of his work is excellent. But based on this lone article I am not impressed.  Senelick was inspired to write the Huffington Post article after seeing a TED Talk by Joshua Prager. See http://www.huffingtonpost.com/joshua-prager/ted-talk_b_3839143.html I do not Prager's talk. I do not like Selenelick's resulting article. I object passages such as the following:

The truth is that many of the things that enrich and provide quality in our lives are the same for able-bodied individuals and for people with disabilities. But society doesn't see it that way. Many, if not most, people assume that someone with a severe disability couldn't possibly have the same dreams and aspirations that they do. Think about it. One minute Joshua Prager was able-bodied, strong and walking the streets of Jerusalem, yet in a millisecond he became a severely disabled form of his prior self. Did his dreams, aspirations and the things that brought him joy change? No, the dreams are there, but the ability to achieve them is impeded.

Senelick makes a good point--people with and without a disability have the same basic needs and aspirations. A family, a good job, a house, and friends. A casual reader will undoubtedly think the "ability" to achieve one's dreams are "impeded" by a physical deficit. Heavily implied is that Prager is inspiring because immediately after his spinal cord injury he was completely paralyzed and now can walk with a cane. I see nothing inspirational in this. I perceive Prager to be lucky in having an incomplete injury. I speculate cutting edge protocols were performed by EMS workers after his traumatic injury and that he had excellent rehabilitation. Inspirational is about the last word that would cross my mind. Prager, as all TED Talk speakers do, had a great story to tell. And like all Ted Talks speakers Prager was photogenic. 

Senelick went on to note that: 

If something happened to my wife, I suspect there is some woman out there who would meet me for a cup of coffee at Starbucks. Now, if I have a stroke, has the pool of women willing to have that cup of coffee narrowed? You bet it has. I may feel like the same person in my head, but my disability narrows my social opportunities. My peer group initially shows interest and then slowly disappears. 

Senelick is correct in stating in the days and weeks following a SCI people are surrounded by friends and family. But over time people fall by the wayside. This is too often an inevitable result of a SCI. Life post SCI simply takes a different direction. Rare is the person with a SCI that goes back to the job and home one had before an injury. The reasons for this can be simple or complex. The point here is life post injury is radically different in a multitude of ways. The primary reason this is the case s the social response to disability and ingrained social biases we do not as a people question. Senelick is also correct in stating "disability narrows social opportunities". We may live in a 23 year old post ADA world but access to mass transportation and accessible housing is problematic at best. Add in a heaping dose of stigma, flavor it with rampant unemployment and one acquires a new stigmatized identity. This has nothing to do with medical care or level of injury. This to me highlights what Senelick did not state: paralysis is primarily a social disease. And I am not referring to STDs.

One more quotation: Senelick states:

we all live for our future prospects. No matter how good our lives are at the moment, we like to think about our next vacation, when our book will be published, or something as simple as our plans with our children for the next weekend -- maybe the beach. Catastrophic injuries and illnesses may bring a sudden halt to an individual's or family's plans. Once the physical part of rehabilitation is complete, how do we provide a "prescription" that allows the person to make a successful transition into areas that give them future prospects? It is not always easy to align your future with your abilities.

I have the "prescription" Senelick seeks. Let us have a national discussion about the barriers people with a disability encounter. Let the next President of the United States in his inaugural address state by the end of his term he vows to insure every bus, train, plane, public school, university, work place, and voting location is 100% to all Americans with disabilities. Let this President state that there is merit to the disability rights slogan "nothing about us without us".  To this end, the President will be sure to appoint at least one person with a disability to every important branch of the government and committee in the Senate, House, and even the Supreme Court.  When I hear this sort of wildly ambitious Presidential address to the nation I will know I am equal to my bipedal peers. Sadly I doubt I will live long enough to hear such a speech. Indeed, I doubt my son's future grandchildren will hear such a speech. 

Martin Luther King I Have a Dream: But I Despair

Over the last week I have read quite a bit about Martin Luther King's famous speech "I Have a Dream". I listen to this speech at least once a year when I feel a sense of hopelessness overcoming me. King was a brilliant orator and I find his words moving at a very deep level that touches my soul. In recent days I wanted to write something about King but words have failed me. Thus I was delighted to read a great post by the Disability Rights Bastard. See: http://disabilityrightsbastard.wordpress.com/  He wrote that he weeps : 

when I re-read Dr. King’s speech. In particular, I weep reading passage:

“One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize an appalling condition.”

I weep because when I replace the word ‘disabled’ for ‘negro’ things are truly looking sad. Not just in the United States but in all the Western countries where I know disabled people – not to mention third world countries. In the intervening 50 years we truly have not come far when it comes to segregation, discrimination, poverty and misery for disabled people.

As a group we have poorer education than average, we have far poorer health (on top of our disability), we earn less money, we have a poorer social life and most importantly, we have much less access to things in our societies that others take for granted. Services are off limits for many disabled people. Stores, cinemas, museums, police stations, yes even hospitals are often off limits for those of us with different kinds of disabilities.

This eloquently highlights why at times I am overwhelmed with despair over the lives of people with disabilities. Of course no one will ever put a burning cross on my lawn and I do not expect to be assaulted simply because I use a wheelchair. But disability based discrimination is rampant and takes many forms. Discrimination can be blatant; for instance, a restaurant employee can tell me "no wheelchairs" or a stranger can approach me and tell me they would rather be dead than paralyzed. Subtle forms of discrimination I have experienced assume that I am physically incapable of performing mundane tasks or that I am both physically and cognitively disabled. While I am energized by my first week of class at Syracuse University, like the Disability Rights Bastard I am not optimistic. I am not optimistic for a particular reason: people with a disability are hopelessly splintered into competing and antagonistic groups. People who are blind I am told are divided between cain and guide dog users. When I write about the social implications of adaptive skiing or biking some in disability studies scoff at me and tell me I have a privileged body. People who are deaf refer to wheelchair users as the chrome police only interested in ramps and wheelchairs. This must change but I do not see this happening any time soon. In line with this thinking Disability Rights Bastard wrote:

For a long time I have wished that we could gather enough people to engage in a march on our respective capitals. That we could be enough people to form a crip pride parade and proudly display our natural diversity. Where the wheelchair users held signs about “standing up for your rights” where the blind were wearing t-shirts saying “Blind is beautiful” where the folks with learning disabilities shouted: “I know things that you will never learn” to the tune of the deaf singing songs of their freedom. However, I don’t have high hopes for any of that to happen. We are moving towards a world where it is survival of the fittest and where money talks. If anything we are heading for a cut-throat world where the so-called weak are going to be culled and there will be no room for individual differences.

The weak are already being culled. In fact the weak, the deformed, the crippled, the different are not even being born. My good friend and colleague Stephen Kuusisto wrote at Planet of the Blind about De Facto Eugenics. See: http://www.planet-of-the-blind.com/2013/08/de-facto-eugenics.html Kuusisto prefaced his comments with a long passage from Andrew Solomon's critically acclaimed book Not Far From the Tree. Much lip service is paid to the idea of choice. The myth in American culture is that we are free and independent thinkers. We are in charge of our own destiny. We are autonomous beings. This myth plays into much of what bioethicists write about. We value concepts such advance directives, informed consent, autonomy, and personhood. This is great in theory. But as Kuusisto points out a naivety exists. When a woman is given a prenatal diagnosis for Down Syndrome is she really given a choice? Theoretically a pregnant woman has the right to end or continue her pregnancy. Yet Kuusisto correctly observes "prescriptive abortion is the norm".  Last I checked nationally 93% of positive prenatal tests for Down Syndrome result in a terminated pregnancy. What if a woman chooses to bring a pregnancy to term? She is considered a religious fanatic or a contrarian that selfishly brings a person into existence who is not capable of making an economic contribution to society. Welcome to a brave new world. Kuusisto chilled me to the bone when he wrote "there is no need for Eugenic legislation in our current health care system" and that "radical decisions have already been made". Theses radical decisions are couched in dense academic prose by utilitarian philosophers such as Peter Singer and Julian Savulescu. Bioethics as a scholarly field seems to be enamored with utilitarian philosophers. I find this deeply troubling. So next October when I go to the American Society of Bioethics and Humanities meetings I will get to see and hear Julian Savulesco give a key note talk reserved for widely respected thinkers in the field. Yes, I will also hear Rosemarie Garland Thomsen give a talk as well but she is clearly on the B team in my estimation. The mere fact Savulescu was asked to speak and given the biggest platform humanly possible troubles me because as Kuusisto put it "radical decisions have already been made". Those radical decisions I know do not involve respect for my crippled body. Those decisions already made are a threat to me and all people with a disability. 

Big Trouble: I Dare to Take on Inspiration Yet Again

All my life people have a penchant for giving me nicknames. In my teens one nickname stuck--trouble. I would enter a room and one friend would always remark in a slow drawl "Here Comes Trouble". With each word his voice would rise often prompting laughter. I suppose I was trouble in part because I had a penchant for asking a lot of questions. I simply did not believe what I heard or read. Then and now I do not accept the status quo--I question everything. Today I am going to do something that will get me in big trouble. I am going to take on the concept of inspirational. Whenever I deconstruct the larger meaning of inspirational or worse yet the cure industry associated with spinal cord injury, I know I am going to get slammed with email that borders on hateful. I am sorry but I sometimes cannot keep my mouth shut. Today is one of those days.

A story is spreading quickly in mainstream news outlets about a young paralyzed bride who walked down the aisle on her wedding day. Here are the bare bone facts. Stevie Beale married Jared VanAusdale earlier this month. Beale was paralyzed in a car crash in 2006 that killed her friend. After Beale became engaged months ago she began to focus on a single goal--walking down the aisle in her wedding dress. She accomplished this goal. There is no question Beale looked gorgeous on her wedding day. She succeeded in achieving her goal of walking down the aisle. After the couple exchanged vows videos on You Tube and multiple news outlets show Beale being carried by her husband in her wedding dress. This is through and through a Hollywood like production that the wedding industry capitalizes on. It is romantic in the extreme yet I refuse to provide a link to the videos that abound. I have no doubt most people who saw the short clip of the bride walking down the aisle were teary eyed. Beale and her husband are photogenic and attractive people. I wish them nothing but the best. I am happy for the couple and especially for Beale who set a goal and achieved it. 

Here comes the proverbial but: I do not like the videos or the way the mainstream news media has framed the story. My problem is not with Beale and her husband. Not at all. Instead I object to the way her wedding day is portrayed. The word inspiration is being used in virtually every story. I read headlines such as "An Inspirational Walk Down the Aisle" or "Beauty Exists" or "Dreams Come True" and cringe. To me Beale is no different that any bride. The way she moves down the aisle is meaningless to me.  The mainstream press however relies on an antiquated notion of paralysis and disempowers Beale. For example, Today.com wrote Beale was devastated by the death of her friend and paralysis. The story wen on to note "once a softball player, gymnastics teacher and soccer coach, she questioned what she would do with the rest of her life when the activities that had defined her were no longer physically possible". This is simply wrong and relies on ignorance. I am sure Beale's wondered what life would be like post SCI--all people do. But the idea sports or physical activities are no longer possible ignores the fact adaptive sports are equally enjoyable. Beale is quoted after her injury that she "thought I was doomed to my parents house, to never have a boyfriend, or never get married. I thought I was going to sit at home and rot away". I understand this concern. I had similar thoughts myself in 1978. But no one asks why? Why should any person who experiences a spinal cord  injury worry they will rot away? People rot away because society refuses to accommodate difference--in Beale's case using a wheelchair. Utterly lost is the fact American society remains hostile to the presence of people with a disability. A powerful troika prevents too many people like Beale post SCI from leading a rich and rewarding life: 1. A lack of accessible housing. 2. The lack of accessible mass transportation. 3. Rampant unemployment. To these three variables one can add stigma, social isolation, and the belief it is socially acceptable for a paralyzed person to spend the rest of their life feeling sorry for themselves.

The focus of the mainstream media was what I would expect: it is simply a feel good story. No real questions or issues were discussed that directly affect the lives of people who experience a SCI. Every story relied on an emotional reaction. Paralysis is considered to be an individual tragedy. I see no tragedy in paralysis--it is a physical deficit the vast majority of people adapt to over time. Of course no one wants to be paralyzed, myself included. And yes such an injury changes the direction of one's life. But so do many other life changing events. Think divorce, death of a parent, birth of a child, drug or alcohol abuse, employment or lack of employment etc. The real problem Beale and her husband will face are not glamorous and will likely never be discussed in a mainstream newspaper. The problems I am referring to are not sexy nor do they prompt an emotional reaction. Here I go back to my troika of a lack of housing, transportation, and employment. These issues require some real thought and a re-evaluation of disability in the broadest sense of the term.  Until disability rights and civil rights are assumed by all people to be one in the same stories such as Beale's will continue to be published. Such stories ignore the nitty gritty issues that are barriers for Beale who obviously wants to lead to a rich and full life. 

There is another  aspect of Beale's story that is inherently disempowering. Her husband is consistently portrayed as the reason she could walk down the aisle. In story after story it is noted Beale's husband "brought her back to life" and is well on his way to becoming a saint. What is assumed is that Beale's husband is a saint because he married a paralyzed woman. Only one story I read noted Beale did not meet her husband until well after she was paralyzed. Somehow Beale must have thrived on her own for years. In fact I am willing to bet she is a dynamic human being. Why else would a man ask to marry her? At the end of the day,  I find the entire story simplistic and misleading. Beale's interest in walking, based on what I have read, was restricted to walking down the aisle in a wedding dress. I get this. Many women put great thought into what they will wear on the day they will marry. But this is a very different matter. In fact what I found of great interest was what was not shown. Beale sitting in her wheelchair.  It made me think yet again that a wheelchair could be characterized as a portable social isolation device. And this my friends is the real problem.

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.