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Saturday, May 21, 2016

Coastal Storm Awareness

For most of my life when I think about what would happen to me in the event of natural disaster, plane crash, train wreck etc. one thing springs to mind: I am screwed. When I fly the flight crew will once in a while say something to me that "In the event of an emergency landing..." I typically give them a snarky look as we both know the odds of surviving an emergency landing are remote. The odds of me, a wheelchair user, surviving an emergency are even more remote. Some how I doubt flight crew or my fellow passengers will run into a burning plane to carry me out. Not a chance this will happen.

Today I believe my chances of surviving a natural disaster are increasing by the day. I can state this with some authority as I was lucky enough to be part of a group of scholars who worked on a Sea Grant Coastal Storm Awareness Program. The project that I specifically worked on concerned Hurricane  Sandy and why people in the NYC area weathered in place or rode out the storm. Almost all people with a disability stated the same thing: they had no where to go. The City of New York was sued and the Federal Court ruled that the city discriminated against people with a disability because it failed to consider them in plans for a large scale natural disaster. Link:

Much has changed since Sandy. Emergency managers are not only listening but including disability issues into evacuations plans. How well this will work at present is unknown. What I do know is that emergency planners are very much aware and concerned all people are evacuated. By itself, this is a huge leap forward. Below is a short documentary about our work.

Thursday, May 19, 2016

More on the Murder of Courtney Liltz

Yesterday I wrote about Bonnie Liltz who was due to be sentenced in court for murdering her daughter Courtney. The prosecutors in the case recommended she receive no prison time and simply be put on four years of probation. The Judge Joel Greenblatt rejected the prosecutor recommendation and sentenced Bonnie Liltz to four years in prison. According to various news reports, Liltz, appearing to be frail,  burst into tears upon hearing the verdict. Liltz’s family was stunned. Liltz bond was revoked and she was immediately taken into custody. The Chicago Tribune and multiple local Chicago news outlets covered the sentencing. The sentencing received some national attention as well. I spent the morning reading the reaction to the sentence. Not surprisingly, the reaction was highly emotional. The dominant theme was the case is tragic. Based upon my reading, the dominant opinion was that the sentence was far too harsh. This is not surprising. Life with a disability is consistently devalued. Stigma consistently clings to disability. We people with a disability are fearful reminders of just how fragile the human body is. Symbolically, we represent the limits of medical science and technology. Our lives are inherently compromised and we are less human. How do I know this? I am reminded daily by typical others in large and small ways. Today, my reminder was a trip through the comment sections of various newspapers that covered the sentencing of Bonnie Liltz. Below is a random sampling of what I found. It reflects an ugly side of humanity I have become accustom to encountering.

This woman should receive some serious credits for all the years she took care of this young lady whose own parents apparently are not to be found.

This sentence warrants an immediate appeal. This woman is *not* a criminal!

Daughter had zero quality of life.

Wrong headed decision for sure. Judges generally go with prosecutors. This poor woman will now suffer more. Judge Greenblatt got his pound of flesh

She should just get counseling. This not your normal case. imbecile judge.

The prosecutor asks for probation and the judge gives her 4 years? Insane. Sadistic.

This judge ought to be recalled or kicked off the bench. A desperate mother in a desperate situation. Shame on the Judiciary of Illinois!

Four years in prison is uncalled for. This lady is not a threat to society and prosecutors even asked for probation. This is a judge being a big shot on a woman who is already suffering. This isn't justice.

I support euthanasia for people like Courtney who suffered on a daily basis. This was a mercy killing from her mum,

For the judge to say what she did was not an act of love is what irritates me the most.

She should have gotten probation. What she did was out of love.

Joel Greenblatt -not exactly a man of compassion. Even the prosecutors asked for only probation. Now this woman's life is ruined even more. Greenblatt from his statements thinks he is God. Greenblatt should be removed from the bench.

The above comments are disheartening. They are a reminder of what people really think when disability in the broadest sense of the term enters one’s life. Let’s be very clear: Bonnie Liltz is now a convicted murder. Yet she has received an unprescedented amount of sympathy. A large contingent of people think she should not be imprisoned at all. One commenter quoted above suggested euthanasia should be a legitimate option for people like Courtney Liltz. The quality of life Courtney had was deemed substandard. Her death while sad was in fact a blessing, an act of mercy.   Stephen Drake was quoted in the Chicago Tribune and he really hit the nail on the head with the following: “Its almost a sainthood thing. This mother took care of someone no one else would want in her home, so maybe we should go gentler on her. In order to treat a perpetrator more gently than other perpetrators, we have to devalue the victim.”Link:

Living a devalued life is something I have forcefully rejected for the last 35 years. I do not consider my life as being devalued in any way shape or form. I am content with my existence and body. I wish others perceived me as equally valuable but I know that is not the case. Where ever I go I am a problem. Likewise, caring for Courtney Liltz was a problem. She had the mentality of an infant. She required a great deal of care. She was suffering.  She could only say a single word. This is a tragic existence for mother and child. The child in this case was a 28 year old woman. The bar was set low for Courtney’s care because her quality of life was equally low. Bonnie Liltz was praised for taking immaculate care of her daughter. All news outlets stated Courtney was kept clean. She was well fed.  She was in good physical condition. Mother and daughter slept in beds a few feet apart.  But wait there is more. Bonnie Liltz socialized with other people and included her daughter. She took her for walks. Her house was spotlessly clean. This makes no sense when compared to a typical parent raising a typical child. The implications here are obvious to me.  Apparently they were obvious to Judge Greenblatt as well.  In sentencing Bonnie Liltz he stated:

Life is precious. Even a life that is disabled. Even a life that is profoundly disabled. Your daughter, Courtney Liltz, was innocent and vulnerable and fragile. Her life was fragile. All life is fragile. The choice you made was not an act of love. It was a crime.

Murder is murder. All the emotion in the world should not obscure this fact but obscure it is when disability is present. Bonnie Liltz broke down in tears upon being sentenced. Her family and lawyer were shocked.  I may sound cold hearted but Bonnie Liltz did the unthinkable: she committed murder. Stephen Drake noted “we put high penalties on murder because we send a message that we value life”. According to the Bureau of Justice Statistics, the mean prison sentence for murder and non-negligent  manslaughter was nearly 20 years and 8 months; the median was 24 years and 3 months. I am no legal scholar but Bonnie Liltz got a very light sentence. She could have been sentenced as charged and convicted to 14 years in prison.  In theory Liltz could take back her guilty plea. She could then go to trial for first degree murder but this carries great risk in the form of a 20 year mandatory minimum sentence. For now, Liltz defense lawyer will file a motion seeking reconsideration of the sentence. 

I am deeply bothered by the way in which this case has been framed and the overwhelming support Bonnie Liltz has received. This case reminded me of a memoir I tried to read that has gotten uniformly high praise--High Blue Air by Lu Spinney. The book details the aftermath of Spinney's son who experienced a severe traumatic brain injury in a snow boarding accident when he was 29 years old. For more than 5 years she and her family cared for her son. She detailed his recovery and what it was like to care for someone in a minimally conscious state.  At some point, Spinney came to conclude her son's life was one long experience of unbearable suffering. She wrote:

I thought, how can he want to continue? His life was day-long, night-long torture. But I assumed there was nothing we could do except to continue doing everything we could to make his existence more comfortable. The most painful thing was imagining him, in his moments of awareness, feeling so profoundly lonely, unable to communicate, totally dependent on other people for every single aspect of his life. He was a ghost of himself.

I don't have the heart to recount the rest of this memoir. Suffice it to say, Spinney concluded the only "gift" I could give him was death. Death as a gift? A parent frames the death of their child as a gift? Between the murder and of Courtney Liltz and this memoir we are in unchartered waters. What happened to Dylan Thomas famous poem "Do not go gentle into that goodnight"? What happened to placing value on all human life? I understand broad based advances in medical technology have created unimaginable ethical conundrums and end of life care is exceedingly complex but where is our humanity. We live in a world in which a parent considers death is a gift to be bestowed upon her son. A world where a parent murders their child with a severe disability and is shocked she gets sent to prison. This is so wrong my heart breaks. 

Wednesday, May 18, 2016

Murder is Murder: Misleading Spin

On May 27, 2015 Bonnie Liltz murdered her 28 year old daughter Courtney at their home 30 miles outside of Chicago.  Bonnie Liltz survived the murder suicide attempt. Her daughter, Courtney, died a week later. Bonnie Liltz has received a great deal of sympathy. Her lawyer reports she has gotten letters of support from all over the country. Prosecutors and Liltz defense attorney, Thomas Glasgow, agreed that jail time is not going to be suggested. Initially charged with first degree murder in the death of her daughter last week Liltz pleaded guilty in Cook County Court to the lesser charge of involuntary manslaughter. Prosecutors have recommended that she receive four years probation and mental health treatment. It is possible the judge could send Liltz to prison for 14 years however this is not expected to happen.

What have I left out of the above story? Sympathy for a murderer? No prison time for a mother who murdered her own daughter? How is this possible? More astounding, cases like Liltz though uncommon are not exactly rare. The variable left out is disability--severe disability. Bonnie Liltz adopted her daughter at the age of 5. She knew Courtney had cerebral palsy and profound cognitive deficits from damaging seizures when she was two years old. Courtney could speak only one word: "Momma". Over the last year all news accounts have been extremely sympathetic to Bonnie Liltz. There is no need for me to provide links. The sympathy is universal. News accounts have been dominated by raw emotion. Bonnie Liltz is described as a uterine cancer survivor. Diagnosed at 19 years old her body was ravaged by radiation therapy and her survival came at great cost--she could not conceive herself. Hence she adopted Courtney and boundlessly loved her. She cared for Courtney and attended to all her needs 24 hours a day for two decades. They shared the same room and their beds were mere feet apart. Her friends and family told the judge Bonnie was devoted to Courtney--she was in fact her life. A friend stated "Courtney was always clean, neat and nourished". When Bonnie Liltz pleaded guilty the court room was filled with supporters. As for Liltz herself she stated in court "I would like nothing more than to turn the clock back and have the ability to care for her again. I have pain inside that is beyond words". According to court transcripts, Liltz recalls waking up in severe pain and "soiling myself and my bed. My heart was pounding and I was shaking and sweating profusely. She had just been given a grim prognosis from a physician and was convinced she was dying. She wrote a hastily written suicide note and added a lethal amount of prescription drugs into her daughter's feeding tube. She then drank what she thought was a lethal cocktail of drugs in a glass of wine and expected to die. In the suicide note she wrote "I am so sorry to put you all through this but I can't leave my daughter behind. She is my life."

No doubt this is a tragic story. Suicide is the tenth leading cause of death in the United States. As a father, murder suicide is unimaginable. But murder suicide is not unimaginable for all parents. Lilts'z concerns are in fact common among those parents that care for a severely disabled child their entire lives. Curt Decker of the Disability Rights Network hears this from parents who care for their severely disabled children. They know all too well that eventually they will be physically unable to care for their children. They know their children will out live them. They are justily terrified and their worries are universal--who will care for my severely disabled child after I die. This population of people, severely disabled and their parents who do care 24 hours a day, are nearly invisible. The social supports are grossly lacking. Bonnie Liltz had good reason to be fearful for her daughter's future care. In 2012 Liltz had surgery and had to put Courtney in a nursing home for a week. Courtney did not understand why her mother was not present. Upon her return home Bonnie Liltz knew her daughter was upset and not herself. Bonnie Liltz was appalled by the substandard care her daughter received in the nursing home. According to court transcripts, Liltz maintained she was neglected. Liltz said Courtney was "covered in drool, her clothes were wet, and she was sitting in her own filth in a corner. It was with that memory that I felt the only place I knew she would be safe and happy would be in heaven with me".

I understand the emotion. Any successful or failed murder suicide  is tragic. But lost in the emotion and support for Bonnie Liltz is a massive social failure. Parents of children with severe disabilities are terrified of what will happen to their children when they die. Think about this. Think of what this fear implies. Think of the injustice. Think of the substandard care. We are talking about the most vulnerable humans. How can we as an advanced civilization let this happen. For me the tragedy is that those parents who care for severely disabled children have a very real and legitimate concern. If I were in their situation I would be just as worried.

Compounding parents fears is the fact Bonnie Liltz is getting a great deal of sympathy. As many disability rights experts have noted, the implications for the sympathetic treatment Liltz has received is troubling. Did Courtney's life have less value? The lenient treatment surely indicates this. Murder is murder is it not? There is no doubt this case involved premeditation. Legal experts in Chicago seem to agree probation is an appropriate sentence. Jeffrey Urdangen, director of the Center for Criminal Defense at Northwestern University Pritzker School of Law believed the sentence recommendation was "not so much about sympathy but the prosecutor decided there was sufficient mitigating evidence. This is an exceptional case. Sending a woman who's got a critical illness to prison for an act for what some could interpret as mercy... There are so many facts that lessen her culpability"

These words terrify me. Is killing a severely disabled child an act of mercy? Is killing a person with what is perceived as being a severe disability mercy? The facts in this case are couched in kind words. Let me cut to the chase: Coutney Liltz's life was not valued. Life with a severe disability, especially a severe cognitive disability, is not valued. Such an existence is not valued and deemed less. Life with a disability is inherently inferior. Where does this line of logic end? Where does one draw the line? Are we going to try and eliminate all people with a disability as Hugh Herr of MIT is trying to do? Perhaps we just end the life of those with a severe disability? If so, how do we define and identify what is and is not a severe disability. If a person experiences a spinal cord injury at what level of injury is life not worth living. How about those that experience a traumatic brain injury? Are the lives of those in a minimally conscious state worth living? What about those with dementia? At what point is the quality of life so limited we can  end their lives?

The public health care implications are significant. According to Glenn Fujiura, professor in the Department of Disability and Human Development at the University of Illinois at Chicago, 80% of adults with significant development disabilities live at home with aging parents. Liltz is in fact not an isolated case but a harbinger of future cases. Fujiura notes the Liltz case is a prime example of a larger broken system. I predict without substantial social change cases such as Bonnie Liltz will become increasingly common. This grim thought is obscured by the mainstream media that focuses not on the larger broken system of inadequate social supports for the most vulnerable but rather on the diminished value we place on the lives of those who live with severe disabilities. Bonnie Liltz needed robust social support not sympathy. She valued the life of her severely disabled daughter Courtney. The fact our society did not provide adequate social supports for Courtney Liltz is the real tragedy. A 28 year old woman died needlessly. A mother felt her only option was to murder her daughter and commit suicide. This is the tragedy. Worse, more deaths will follow unless we pay attention to the very real social injustice that took place.