My Brother Teddy: Artistic Indulgence

I sent a link to the below six minute film to a friend. I did not know how to react--I could not grasp the significance of the film. And the film is significant. It is part of a larger project being undertaken by Kelly OBrien an independent film maker that lives in Toronto. The short film has been critically acclaimed and given its appearance in the NYT it will be widely seen. It is an impressionistic film made by parents of two children--Teddy has cerebral palsy and has a significant physical and cognitive deficits. Emma just turned ten years and is a typical child. The film is told through the eyes of Emma who talks about her life and love for her little brother Teddy.

My friend in a mere two words characterized the film perfectly--artistic indulgence.  The film is undoubtedly captivating. Emma is sweet and kind. She has a lovely voice and the imagery is nothing short of wonderful. It captures a set of Emma's memories of childhood and her relationship with her brother. Teddy's disability is an integral part of their lives. Emma loves her bother unconditionally. There is no doubt in my mind the film will be well received by a wide range of audiences.  I can readily envisions some viewers will shed tears. As a parent I get this. Childhood is all too short and as my son approaches his graduation I am often taken aback--I got old somewhere along the line and spawned an adult.

If the film is so captivating why am I troubled--and deeply troubled I am.  The film is beautiful. Far too beautiful and entrancing. It is hypnotic in fact. It perfectly captures the beauty in sibling relationships and the innocence of childhood. What is utterly absent is reality--the grim reality of what life is really like for a child like Teddy who has severe physical and cognitive deficits. Absent is the fight for appropriate adaptive equipment. Absent is the fight for a quality and appropriate education. Absent are the barriers to good health care. Absent is the lack of accessible housing and mass transportation in the form of school buses with a lift. Absent is any semblance of the reality involved in raising a child like Teddy. Absent is what will happen to Teddy when he turns 21 years old and transitions into meager adult services.

I do not like to write the above. It makes me feel hard and cold; cantankerous for sure. Should I not be happy a film maker finally produced a short film that portrays the beauty of disability and the relationships it fosters? Should I not celebrate the obvious love Emma feels for her brother? I should but I just can't. The day to day life for people like Teddy is just unacceptable. Worse, the reality for Teddy once he becomes 21 years old is even more circumscribed and limited. This is a decision made by society that assumes life with a disability is inherently limited. We decide not to provide or value the needed social supports for people like Teddy. The fact is the timing of the film is bad--these are hard times for people with a disability. The lack of resources and energy directed to enhance the quality of life for all people with a disability is woefully lacking.  So here I sit and feel like Scrooge.  I am sorry but as lovely as the film is I live in a world where my existence is not valued. Collectively we have created a draconian system that is based on a form utilitarianism that literally destroys lives. I am at risk but with the support of others manage to live a full and rich life. I hope Teddy and his parents can create a similar set of significant social webs. Without this,  I worry about Teddy's future as well as mine.  Social isolation is a terrible thing can and does kill the human spirit.

No Remorse: Lucas Ruiz

Erika Wigstrom murdered her 17 month old son Lucas Ruiz. The coroner report identified the cause of death as “acute ethanol intoxication”—-the active chemical in hand sanitizer. According to various news reports Wigstrom confessed to murdering her child after he arrest. She told the police she killed her son Lucas because she did not want him to suffer. Lucas was born with Down Syndrome. According to police she has shown no remorse. In fact she confessed to a previous attempt of poisoning. It is not clear if the previous poisoning was done by Wigstrom or Cesar Ruiz, the boy’s father. Wigstrom is being held without bond. She has been charged with first degree murder. Prosecutors have not established if they will seek the death penalty. According to police reports Wigstrom injected Germ X hand sanitizer into her son’s feeding tube. The blood-alcohol level at the time of death was 0.280, four time the legal limit for an adult to drive. The child’s father is facing a second degree cruelty to a juvenile charge. When Lucas was two months old and about to have surgery to correct a heart defect he is accused of giving his son rum via his feeding tube (Lucas blood-alcohol level was 0.289). The alcohol caused seizures and surgery was cancelled. There is confusion over exactly what took place. Lucas parents have told conflicting stories. The father has admitted to giving his son rum via the feeding tube in an effort to relieve his pain. The mother has admitted to putting hand sanitizer and perfume oil into her son’s feeding tube. 

The death of Lucas Ruiz is a social tragedy. It is a social failure because the system failed to protect a defenseless infant from his own parents. Lucas Ruiz parents poisoned him not just once but twice. I am sure a full and extended investigation will take place. The investigation will not help Lucas Ruiz and I seriously doubt it will prevent future horrific cases of child abuse and murder. This is a grim assessment but we are living in grim times—grim times if you are the parents of a child with a disability or a person with a disability. Social supports for people with a disability are cut to the bone. The social safety net is in tatters. Nation wide people with a disability are struggling. Access to good health care, mass transportation, accessible housing, equal educational opportunities, and employment remain daunting challenges. This however is not how the story of Lucas Ruiz death will be framed. Sensational headlines and lurid details already dominate early news reports. The media spin has begun. 

Wigstrom according to the police has shown no remorse. No remorse! How could a mother show no remorse? She must be evil—the essence of the heart of darkness. But wait! Wigstrom characterized her son’s death as a mercy killing. She did not want her son to suffer anymore. Lucas Ruiz’s father told police he believed his son would be better of dead. He had hoped his son would die before or during the scheduled heart surgery. Wigstrom’s Facebook page contains a video that shows her next to her son’s coffin and the statement “I have no more tears to shed because my kid is so cool God wanted him. I mean, if any body is lucky it’s me for being his mom. I’m not going to cry”. The press has bought into emotion rather than reason. The most disturbing aspect of this is that it works. Wigstrom was on television and told a  terrible story about about how she held her son while he had seizures but things took a turn for the worse. Again, the focus is on emotion. No one wants to see their child suffer. Disability is about pain and suffering. No one wants a disability much less a disability that causes nothing but pain and suffering. This simplistic assessment is shockingly resistant to change. Of course no one wants a disability. In fact, I often darkly remark I do not recommend the experience of being paralyzed. I am also quick to note I do not physically suffer. Like the vast majority of people with a disability we simply adapt to bodily difference. I use a wheelchair. Blind people use a white cane or guide dog. Deaf people learn to sign. People with Autism use alternate means of communication. The list of disabilities is long as is the list of adaptations. It is really ordinary stuff. We are an adaptive animal. Evolutionary theory demonstrates this quite well. 

I am not suggesting people with a disability do not suffer. We do. So do people without a disability. All humans in fact will suffer at some point in their life. What is different for people with a disability is the fact we are expected to suffer. We are supposed to lower our expectations. We are expected to live lesser lives. Our lives are diminished because of our disability. This line of reasoning is common place and deadly. Thus when I read about Lucas Ruiz death I thought of March 1st. March 1st when people nationwide gather in remembrance. On March 1st we remember and honor those with a disability that were killed. Some, like Lucas Ruiz, are killed by their own parents. In the last five years over 40 people with a disability have been killed by the parents.  Other people with a disability are killed by a sibling or care giver.  For the last three years ASAN, ADAPT, Not Dead Yet, National Council on Independent Living, and the Disability Rights and Education Defense Fund have held vigils. These vigils get very little press outside of the disability rights community. I am ashamed to admit I have not attended a vigil. This will change. Next March 1st I will find a vigil to attend and honor Lucas Ruiz and all others with a disability that have died.  That is the story worth reporting about. 

A Bad Cripple Goes to NYC

Last month Joseph Fins invited me to talk at Weill Cornell Medical College where he is professor of Medical Ethics. I was somewhat surprised by his invitation. Fins is the past president of the American Society of Bioethics (ASBH), a Hastings Center Fellow, and a major figure in bioethics. Our dealings in the past had been testy. Let me correct that, I have been severely critical of Fins and others about the lack of interest and concern about disability access at ASBH meetings. Last Fall I sent Fins a blistering email and as President of the ASBH he was well within his rights to hit the delete button.  Much to his credit, Fins did not delete my email nor did he reply in kind. Instead he called me directly and suggested I become part of the ASBH Presidential Task Force on disability. He also asked me to come to his office for lunch prior to the ASBH meetings in Atlanta so we could discuss the lack of access at past ASBH meetings. A week later we participated in a meeting in Atlanta with many others interested in making the ASBH meetings accessible.  While the results have been meagre there is at least an on going dialogue for the first time. 

Simply put, Fins is a major player in bioethics. He is also a larger than life figure—a big gregarious man. If he is a room you will know he is present. I enjoy his company and respect his extensive scholarship in neuroscience and neuroethics. He reminds me of the many outstanding neurologists I was exposed to growing up on neurological wards of 16 morbidly sick kids. And oddly enough it turns out his father as well as mine worked in the lucrative world of advertising—real life Mad Men. 

I was surprised and delighted to be invited by Fins to talk to residents in the morning and faculty in the late afternoon. I was surprised because invitations like this are infrequent. I consider myself an engaged scholar—I work in my area of expertise, bioethics and disability studies, but act as a scholar and disability rights activist. I am for example on the board of Not Dead Yet and at the same time work and teach at Syracuse University in the honors program. My position in disability activism and academia is to a degree liminal. I am not a bioethicist. I am not a hard core activist. I am neither fish nor fowl and I am doing my best to establish a unique position. I suppose one could characterize me as a buffer that works in two mutually antagonistic fields. It helps that I have legitimacy in academia and disability rights. I am crippled—no way to ignore that. But I also have a PhD from a prestigious Ivy League university that gets my foot in the door. Most importantly, I think I can make a real contribution via the sort of talk Fins asked me to make. 

In the last year it has become clear to me that my work resonates in the health sciences—especially in teaching hospitals. Physicians know our health care system is failing people with a disability. They see first hand the over whelming effort made during critical care to save people’s lives. These lives are then lost or destroyed in the weeks and months that follow when the required long term social and physical supports are grossly inadequate. It must be gut wrenching to watch. Imagine treating a person after a traumatic spinal cord injury and taking them from the crisis of injury to medical stability. What a great victory. But the knowledge that this same person is given an ill fitting wheelchair, an inappropriate wheelchair cushion, and after two weeks of rehabilitation is sent to a nursing home at the age of 25. This social failure must break the hearts of all involved not to mention be soul crushing for the person who was injured and is trying as hard as humanly possible to reinvent them self.

I suspect Fins gets disability far more than his peers in medicine and bioethics Fins sees well beyond any given diagnosis and considers familial, social, and economic issues. If framed correctly, I can envision him incorporating a disability rights perspective that could improve the lives of people with a disability. Based on how Fins described his recent research and his forth coming Rights Come to Mind: Brain Injury. Ethics, & The Struggle for Consciousness, his work has had a profound impact on his conception of disability. But I know something Fins does appreciate enough but will over time come to realize. We are treading into uncharted territory and mine fields abound. Incorporating a more nuanced discussion of disability in the health care setting, especially in medical education, is going to be an uphill battle. Great social skills are required as are an open mind, willingness to admit error, and the swift ability to accept change. All this is based on the premise of mutual respect. For my part, I am deferential to clinicians. I go out of my way to reassure them that I am not “in the trenches” nor do I make the life and death decisions they do. I am in short not here to second guess—a statement that prompts a veritable sigh of relief. Fins did the same thing with me and showed the respect that is too often absent in the life of a scholar with a disability. 

Fins went all out to make me feel welcome. The medical school picked up my expenses and Fins made sure I was escorted every where I went. He introduced me to people as his colleague and was gracious at every turn. In the morning I spoke to residents with Fins and two other scholars in a good sized auditorium.  We had a wonderful lunch at the faculty club and I got to spend some time with Kim Overby discussing her work. Kim was kind enough to show me where I was going to be speaking to faculty. To say I was more than a bit intimidated would be modest. My first thought was I am in way over my head. I half expected Obama and Putin to walk in the door with an entourage and discuss the crisis in the Ukraine. I was deep in the heart of power central. 

Rather than read my paper, “A Thick Description of the Atypical Body in the Health Care Setting”, I talked off the top of my head. I tried to accomplish three things: establish the devaluation of people with a disability that can and does result in unnecessary death. I suggested a Geertzian approach to patient care in the form of a thick description that could lead to greater enlightenment. I essentially argued medical knowledge takes one only so far, the webs of social significance of any given patient must be understood. Lastly I discussed the Tim Bowers case as an example of a life needlessly ended. I took strong exception to the reaction of most bioethicists—that Bowers asserted his autonomy and though his death was sad it was his choice to make. I tried to emphasize Bowers was given the illusion of choice and provided an overwhelmingly negative assessment of disability.

I think my talk went well. I am sure three people left the room clearly unhappy with my words--perhaps there were more.  While I am unsure how my words were received I have no doubt those that escorted me around were taken aback by how inaccessible the hospital was. Locked bathrooms abounded. Accessible entrances were blocked off. Getting from point A to point B required great thought and an obscure path of travel. As one would anticipate the more prestigious the location in the facility the greater the lack of access. The Faculty Club and Boardroom bathrooms were grossly inaccessible and gorgeous. Getting in and out of the building was a not easy either. The accessible entrance was blocked off after 5pm and required some creative maneuvering. It was one of those rare times needless obstacles actually made me happy. If my existence were truly valued I doubt bathrooms and entrances would be inconvenient or absent. This drove home an abstract quite effectively.  

The Return on Disability: A Capitalistic Profit Model I Approve of

In the last 25 years the statistics associated with unemployment and disability have not changed significantly. Between 66 and 70% of people with a disability are unemployed. These are grim numbers. The reasons for the shockingly high unemployment rates have been keenly debated. Businesses are loath to hire people with a disability. Years ago I had a student who was stunned by these numbers and wanted to do a fieldwork project. She proposed to go to the mall and ask the big national clothing stores, Gap, Banana Republic,  American Eagle, Ann Taylor, etc for a job application. She wore the same clothing and told the same background story each time. On one visit she would simply walk in the store and ask for an application. She got an application 99% of the time. She would return one week later wearing the same clothes but using a properly fitting wheelchair. She was not given one application. Every store told her they were not hiring. The point here is the social bias against hiring people with a disability is overwhelming.

The CBC report is not perfect. The focus was on people with cognitive issues rather than physical disabilities. Yet this flaw is not in fact a flaw at all. People with cognitive disabilities certainly encounter the greatest employment based bias. What amazes me is the lack of vision among business leaders. On the rare event I go to a retail store and am exposed to a disabled employee the odds of me providing repeat business are pretty much 100%  The odds of me recommending the store are also 100% It is so rare to see a disabled employee they provide the best sort of free marketing. And believe me the word gets around. The flaw as I see it is that hiring disabled employees is too often tied to a powerful executive with close ties to the disability community. This executive, usually a parent of a child with a disability, can put a hiring program in place for people with a disability. Long ago I recall the Home Depot hired many men and women with Down Syndrome. The sad reality is once this executive moves on all disabled employees end up getting fired.  The bottom line is that employees with a disability are almost universally superior to those who have no disability. Thus if businesses want to increase profit margins they should hire employees with a disability. One barrier needs to overcome--baseless bias.

On Comments and Hate

I have struggled in recent months. My struggles are not personal or professional. My struggle has been blog related. Bad Cripple is a labor of love. It is my effort to reach as wide an audience as humanly possible in an effort to promote and advocate for the civil rights of all people with a disability. Until recently I eagerly looked forward to comments made by people who read my posts. I no longer feel this way and have reluctantly begun to moderate all comments.

I have been subjected to an increasing amount of hate email. I have always gotten hate email--one of my first posts that took the cure industry to task promoted some nasty comments. Initially harsh comments surprised me.  Six hundred posts later I have developed a very thick skin. My skin is being severely tested these days. I am getting email and comments that goes well beyond nasty and can only be considered hateful.  Some of the hate email I get hits too close to home. I have created an archive of this email because I am worried. I am sure my concern is misplaced but as a professional worrier I cannot stop worrying.

Two groups of people appear to hate me. First, people with a disability, mostly those with a spinal cord injury,  that want to be cured. No procedure is too risky No operation could be classified as too dangerous. Money spent on ramps, elevators and wheelchair access is deemed a waste. A cure is around the corner. Cure and cure alone is the only worthy goal I am told. My advocacy for disability rights is perceived to be the product of bitterness. My critique of the cure industry enrages people whose sole focus is on a cure for spinal cord injury. These people do not want to hear about how inadequate modern day rehabilitation is. To them, rehabilitation is not needed because they will be cured. My words are despised as is my lack of interest in cure.

The second group of people that send hate email are the parents of children or adults with severe disabilities. I have been told repeatedly that I know nothing of their lives. Like those with a spinal cord injury, they want a cure above all else and at minimum appropriate social supports. They are emphatic on this point. There is no pride in disability. The very idea of disability pride is an affront. Disability these parents assert is terrible. Worse yet, the disability rights movement has left them behind. Disability rights scholars such as myself whose identity is positively linked to disability ignore their lives and suffering.

I will readily acknowledge I have a privileged body. I am independent. My autonomy in the traditional sense of the term has not been compromised by paralysis. Basically I can wipe  my own ass and have control of my bladder and bowels. I perform all my ADLs without assistance. Pain and many other typical post spinal cord injury related complications do not affect my life or work. I am well aware many, most in fact, people with a disability encounter far greater social and physical obstacles. As a parent,  I can only imagine what it is like to watch one's child with a disability suffer. I understand how hard it must be to see snow fall and know that for days if not weeks you will be stuck inside because snow removal is inadequate. I understand life in a nursing home is a terrible thing to endure. I understand poverty associated with disability can and does kill the human spirit. I understand chronic if not life long unemployment can lead one to believe their life has no value. I understand accessing the health care industry can be difficult and frightening. I understand respite care is grossly inadequate for those that provide total care for a disabled person. I understand the never ending fight for appropriate social support is draining in the extreme.

Believe me I get it. I have been thinking about disability for the last three decades. I advocate for myself of course. But my advocacy work and scholarship is dedicated to those that cannot fight for themselves. In short, I advocate for all people with a disability. I do this because it is the ethical thing to do. It is something I will spend the rest of my life doing.

The point of the above is to ask those that have a strong or even violent reaction to my work to please think before you send me an email or submit a comment. Please do not tell me that you hope my son will be paralyzed like Christopher Reeve. Do not tell me you hope my bothers and sisters all become disabled, develop a seizure disorder or dementia. Do not tell me my parents are ashamed of me or I am paralyzed for their past mortal sins. Please do not tell me I am the Anti-Christ. Please do not tell me I am filled with rage and hatred because I cannot walk. Please do not tell me you hope I am in  car crash and die a slow death on the side of the road. Do not wish my house burns down.  Do not curse me or tell me I am going to rot in hell for eternity. All these comments have been sent my way within the last two months.

What good can come from such comments? How can I possibly respond? Criticism I get. I am happy to engage others who disagree with me. I always learn something from those who hold opposing view points. In part this is why I loved the comment section of Bad Cripple. But what I really do not get is why. Why lash out at me? Perhaps these comments are indicative of post 9/11 American culture. Dissent has somehow morphed into a tawdry if not anti American enterprise. Those that oppose the status quo are unpatriotic and possibly dangerous. I know my words can be upsetting to others--others who have an entrenched and often antiquated conception of disability. I have no doubt those that embrace a charity or medical model of disability will not like my work. I know my words can be harsh. I have taken others to task--others with and without a disability. I take no joy in this and instead am trying to make a much larger point. I use the moniker Bad Cripple for good reason. I am bad because I am not willing to bow down to others. I am capable and willing to assert my civil rights awarded to me 23 years ago by the ADA. If I was black and the year was 1950 something I would be considered "uppity". Like historic figures in the civil rights movement I advocate equality for all.
Hence, I am on the side all people with a disability. I have made this choice knowing it will not make me popular. I can live with this.  What bothers me is the hate and venom that has been sent my way by others with a disability. I am on your side. I always will be.  Question me. Challenge me. But please do not hate me.  This is a waste of time and energy. Important work needs to be done to protect and advance the civil rights of people with a disability.  Hate is counter productive.

Stand Ins: Jennifer Johannesen and Others Without a Disability

I am routinely the only wheelchair user when I socialize with friends or meet with professional colleagues. I cannot help but be aware I am different--atypical. My experience as the sole cripple is a constant and takes a mental toll.  As Kermit the Frog would say "it's not east being green".  Green I am. Different I am. Apart I am. Excluded. Belittled. Demeaned. Welcome to my life. Does the fact my life is often perceived by others to be less valuable bother me? Absolutely. When I feel overwhelmed and socially isolated I stop and think. I force myself to acknowledge that I am very lucky. The vast majority of people with a disability encounter far more prejudice than I do--especially those with profound cognitive and physical disabilities. This approach helps but does not change the fact I am far too often alone. My difference is impossible to ignore.

I can only conclude that the vast majority of people without a disability are quite content to avoid me. I also know disability is feared. Well are the one minority group that can be joined instantly. An unsettling thought for sure and the source of much gallows humor among physicians in training. When it comes to disability separate is apparently equal in the estimation of people with no knowledge of disability.  Disability history is rife with exclusion in a myriad of forms. Atrocities in the form of death, unimaginable brutality, and horrific physical abuse are constant as well. This history, the dirty side of disability is not taught and largely unknown outside of disability studies. Few people not directly touched by disability want to talk about disability Jennifer Johannesen is an exception. Link: http://johannesen.ca/2014/02/i-thought-i-knew-everything-already-part-2/ In "I thought I Knew Everything Already (part 2)" she wrote:

 no one wants to deal with people with disabilities. In [Peace's] words, no one gives a shit. For many of us, it’s an uncomfortable experience to be in the presence of obvious difference, perceived vulnerability, awareness of societal failure. And more importantly, we don’t have the time or patience or interest to understand how they are impacted by our discomfort. We don’t want to know how society has failed them. Those who are angry or frustrated are especially easy to ignore.  

I am often placed in the "angry" category and am accordingly easily silences. Johannesen is correct in stating it easy to ignore angry people. No person without a disability wants to acknowledge they are part of a socio-cultural system that purposely excludes people with a disability and utterly fails to provide adequate social supports. But this is the world we live in.  The so called social safety net is in tatters, stripped to the bone. Worse yet people with a disability are hopelessly splintered. Deaf people advocate for qualified interpreters. I advocate for ramps and elevators. People who care for loved ones with profound disabilities advocate for social supports in the form of well trained and paid personal care workers. What is totally absent is a unified front. I cannot help but note the irony here--the medical model of disability is inadvertently used to splinter disability rights and advocacy.

Not all people that support disability rights have a disability.  People such as Jennifer support disability rights as do many others in and outside of academia. I find this support gratifying. Frankly, I will take support from one and all. I find Johannnesn's words fascinating as it highlights the individual toll and ethical conundrums that arise for a person without a disability that supports disability rights. Thus I found the following striking:

I think I am often invited to speak as a convenient stand-in – or I should say, I offer myself as a convenient stand-in – an articulate, dispassionate speaker without an axe to grind and who doesn’t make anyone uncomfortable...

I, on the other hand, am a quintessential good Canadian. My ease with speaking, the ‘tie it all up in a bow’ sort of way I summarize massively complex and nuanced ideas, the lightheartedness with which I can share adorable photos of Owen now that it’s all over – all of these things help make disability consumable and palatable. I now see my complicity in crafting an easy persona to suit public sensibilities. The audience and I can pat ourselves on the back for doing good work, and in the meantime Bill still can’t get in through the front door.

Consumable and palatable I am not. When I read those words I was stunned; enlightened but stunned. Johannesen is particularly insightful. I know there is a profound difference between use. My presence require work and thought because the world is not designed for people like me. I get that symbolically my presence alone carries weight. But the idea in an academic setting my presence makes others uncomfortable enabled the veritable light bulb to go off in my head. I suppose I just refuse to believe more than two decades after the ADA was passed into law I would have such an unsettling influence on others. This in part explains what took place at William and Hobart Smith last Fall when a conference ostensible about disability was no accessible. Link: http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.html  Among the apologies I received from the organizers the most common word utilized  was mistake.  Did a "mistake" happen. No. No mere mistakes were made. To deem the lack of access and obvious lack of thought was no no mistake. To deem it a mere mistake negates the fact my civil rights violated. The college broke the law--federal law. If black participants were asked to enter through the "white only" door would this be deemed a mistake? Not a chance. It would cause outrage and be considered a gross violation of civil tights legislation. This connection was never made by the organizers--people supposedly concerned with disability rights issues.

Johannesson really hit the nail on the head. A person without a disability speaking about their experience caring for a child or adult with a disability is far more palatable. And what can Johannesen and others without a disability do? I do not know. This is an ethical dilemma I have never confronted. This dilemma has increased my already considerable respect for those without a disability who advocate for disability rights.  Thanks to Johannesen I better understand why many people without a disability identify themselves as such before they talk about disability. A comment in the past I felt was not necessary.

I have Icicles!

This is what I see when I walk out my door. I have icicles that go from my roof to the ground. A good eight foot long icicle.  As long as the water remains outside of my home I am a happy man.